Thanks so much for your continued support!!
Sunday, February 28, 2010
Saturday, February 27, 2010
Thursday, February 25, 2010
by Dan Digmann
Moving to the music on the dance floor is nothing new for Jennifer and me. At weddings and parties we always go and claim an unoccupied corner of the dance floor – out of everyone’s way – and “dance.”
This dancing involves Jennifer elevating her powerchair seat so we’re closer to the same height and we either embrace and sway to a slow song or join hands and boogie with our arms to a fast song.
But there was something different this time at WCMU’s annual Night of Louisiana.
This was our second year attending what the public broadcasting network flaunts as a way for people to cure the mid-winter blues. As for me, I always tell others they have to go because it’s just plain ridiculous fun!
So, Jennifer and I donned our Mardi Gras beads and headed out for a night of southern-style cuisine and live Cajun and zydeco music by The Pine Leaf Boys and Lil’ Nathan and the Zydeco Big Timers.
After meeting up with our friends, we swiftly forgot about the frigid late January freeze. Trusting in the sweet fruitiness of overpriced and fully liquored Hurricane drinks to cool the burn from our spicy Cajun dinner, Jennifer and I watched as people swarmed the dance floor three notes into The Pine Leaf Boys’ opening song.
The people’s dancing to the fiddle- and accordion-laced Cajun music was contagious. Jennifer and I quickly claimed an unoccupied corner of the dance floor and throughout the night we danced – swaying and boogying while Jennifer sat in her powerchair.
But with one song, everything changed: Jennifer was standing – honest to God standing! – with me out on the dance floor.
Lord know what led us to give this a try (Jennifer thinks maybe it was a little liquid courage), but all I remember was her looking up at me as the slow song started and I asked, “Did you want to try standing a little for this one?”
Certainly, I always help Jennifer stand to make transfers at home, but never had we stood together like this in public, especially on dance floor with hundreds of people around us.
Jennifer didn’t hesitate to say, “Yes,” and as we always do to stand, she put her arms around my neck and I straddled her right leg, slightly squatted, wrapped my arms around her back and locked my hands together. And she counted, “1, 2, 3.”
And there we were. Dancing our first slow dance. Jennifer and I standing together swaying to the slow song. And all we really could do was smile as we looked into each other’s eyes (although, I do remember telling her how awesome it was to see her standing because she knows how much I enjoy the fact that she’s two inches taller than me).
While her MS-weakened legs likely limited our dance to less than a minute, I truly had lost track of time. I was really dancing with my wife. I’ll bet with Jennifer standing with me we looked just like everyone else on the dance floor.
But I couldn’t tell you for sure. For that moment in time, we were the only ones out there.
by Anne of Disabled Not Dead
Recently I have been asked about why I choose to not take any of the disease modifying drugs (DMDs) for Relapsing Remitting Multiple Sclerosis. It is a personal choice and one that I make as informed as I can be - the side effects in my opinion could well be worse than the disease.
In 1976, for about two years, I had many episodes, but I didn't have a diagnosis yet. All the hustle and bustle of going to med school and holding down two jobs was the culprit of my physical dis-ease, I was sure. I met my husband in 1975 and our future looked wonderful - I would graduate medical school in three or four years with a good job that paid well (after I paid back my loans!). Having children didn't matter much to him or me at that point; I was the only thing that was important to him and he to me.
Then one morning, I got up out of bed to run to the bathroom and landed flat on my face. My legs had failed me; it took a long time to crawl to a chair to get up off the floor. This was to be added to the long list of other symptoms that had been plaguing me for nearly two years to which no doctor had a remedy.
My husband and I weren't married yet but we were living together. I went to school that day and mentioned my symptoms (for the umpteenth time) to my professor and he suggested that I see a colleague of his who was doing a study on neurological disorders. I went after class to see him and he did a neurological exam - prodding here, tapping there, poking here, pinpricking there. He performed an EMG on various body parts. Before pronouncing anything, he wanted me to get a CAT Scan, a fairly new diagnostic machine.
In those days, CAT Scans were about the size of a 12 foot x 12 foot room and only a very few hospitals in Philadelphia had them because they were so expensive. So he called a colleague and got me an appointment that very afternoon. Before I even called home to say I was going to be late, I was inside the machine getting the test. Three hours later, I took the "EL" home and paged through the volume of paperwork I had collected from the neurologist. So many neurological diseases and only one popped up over and over again. Multiple Sclerosis. That night, I had a talk with my fiance. He needed to understand that "this" was not going away and that I had some choices to make.
It was unlikely I would be able to continue on my set course in medical school - I had three to four more years to go and if I missed any length of time due to illness, it would set me back where I would have to repeat several semesters. It was time to think about changing my course selection to something of shorter length and still stay in the medical field, if I could.
A week later, the neurologist came by my class to see me. He asked what "I thought" was wrong with me and I thought "Oh, well, here we go again! Another doc accusing me of being a quack and referring me to a psychiatrist." But I thought if I was honest and said "maybe Multiple Sclerosis" which I had never said to any other doctor, maybe I would get a different response.
And I did.
He thought maybe MS was a distinct possibility. He wanted to do more tests and to document a few more episodes before pronouncement. In the meantime, he agreed that maybe my choice of career might need some reconsideration. I said I was getting married in a month and the stress of it all along with school was a kicker.
Sure enough, the episodes he wanted to document manifested themselves in short order. He started me on a low dose course of prednisone, a common treatment at that time and one I was familiar with because I was taking 5mg a day maintenance for Crohn's Disease. He increased me to 50mg a day - 30 in am, 20 in pm, for 5 days, then a taper which lasted about two weeks.
I thought about what life was going to be like for my husband being saddled with a "sick" wife, a wife who would not become the doctor she wanted to be and, depending on the disease progression, would become dependent on him for the rest of her life. Did he know what he was getting into? Did he really want to marry me? I had to make it clear to him that I was sick and probably always going to be sick. He didn't care, he said; he loved me, he wanted to marry me.
We got married September 18th and by October 12th, 1976 I had a definitive diagnosis of Multiple Sclerosis - three weeks after we got married. We told no one of my diagnosis - not even family. I decided to put a career ahead of having babies for now and my husband was happy with that as long as we made time for each other. I doctored with the neuro until just after New Year's, when suddenly the doctor died of a massive heart attack. And MS flared again.
Thus began the long journey from one neuro to another who offered one therapy after another. Somewhere along the line (might have been the 5th neuro or the 6th), we were told to forget about having children because MS could flare badly.
Turns out that wasn't true, but given the knowledge of the day, what did I know? I was relying on doctors' advice. And telling me that just ticked me off!
I suddenly took a hissy fit and decided that career be damned, I needed to make a decision. I don't like being told NO and to tell me to forget about having children was the straw that broke the camel's back. And naturally, with the body I have, I couldn't get pregnant on my own after two years - I needed help.
So besides going from one neuro to another, I also added going from one fertility doctor to another. Once they found out I had MS, no OB/GYN wanted to give me fertility drugs. So now I needed to learn how to keep my mouth shut, go to a new city, and find a doctor who would supply me with drugs and treatments to get pregnant and have the babies I now so dearly wanted.
Five miscarriages later, I had my first son. Two more miscarriages, then I had my second son. It was clear after the first child that a medical career would take a back seat. Once you hold that little baby in your arms (and he's YOURS!), going to work at anything outside the home became a distant memory.
Very few of us know when we have reached a turning point in our lives. A point where a decision was made to follow a course that was life-changing. To think that I could have followed doctors' advice and not pursued treatment toward having children, to chase a career (possibly a rewarding one), and become complacent in a marriage with just my husband and I (which may have made us become very selfish with no children to share things with), that life seems so far distant now as I look back.
And just look at what the decisions we make in our lives do... to change a chosen course. I cannot imagine my life without my husband and boys. Can I imagine my life without Multiple Sclerosis? Possibly, but then I would not have had the life I have and the people who are in it. I believe God knows what is best for us and He thinks this is best for me. It took a long time for me to accept that. First there was anger, then came acceptance.
In 1976, when I was diagnosed, not much was known by doctors about MS or treatments. Many were afraid to even label you with MS because insurance didn't pay them for such an "obscure" diagnosis at that time.
Peripheral Neuropathy, that's what one of my receipts read - so the doctor could be paid by insurance. I was diagnosed by trial and error, listing symptoms, EMG's, EEG's, Evoked Potentials, CAT Scan, and by doctors "visually" seeing my physical condition to judge "exacerbation or not."
In addition to all the "therapies" listed in this blog, I was put on antibiotic "therapy" for the better part of three years and although there were no visible changes, I was afraid to stop it for fear I would get worse. And I figured, antibiotics heal, so what can it hurt. What it did was made me immune now to certain antibiotics, allergic to others (PCN - penicillin) and deathly sick on others.
After much reading (no internet then), talking with colleagues, and generally feeling lousy, a suggestion was made that my diet needed to be revamped and slowly over the course of about five years, my diet became what it is today. To anyone reading this, if you are going to make changes to your diet by eliminating certain foods, it is my advice to do so - one food at a time. If you try to cut out everything all at once, you may very well fail. Your body will rebel.
In 1977, plasmaphoresis was offered to me (while still taking antibiotics) with the promise that symptoms would be kept at bay. NOPE. I was good for a week or so, then everything came back in spades to where I was before. I did this for about two years. You can read about plasmaphoresis here and here.
IV Chemotherapy (Cladribine - more potent than the oral form which has just been in the news) was the next thing offered, because the thought at the time was to kill off the bad cells that were making me sicker. NOPE. I did this every other month for a bit and it made me sick as a dog.
My husband said nothing was worth being that sick for. I agreed. The decision to go on fertility drugs was made and from 1979 onward, I made a conscious decision to not treat for the MS and no more antibiotics. I truly wanted children and I certainly didn't want to deal with any birth defects - doctors had no idea at the time if any of the treatments I was on would cause defects. Heck, they didn't even know about the fertility drugs I was taking. Pregnancy kept MS at bay, but one could not remain pregnant forever!
In the first year of my diagnosis, I was treated with massive doses of interferon which was believed to wear down the immune system in order to let treatment build it back up again - only stronger. This was common thought at the time (1976). At the time, I knew no one "personally" who had Multiple Sclerosis.
I also went through various other treatments, including IVSM (5000 IU at a time - a real killer & same dose for everyone, which proved to me they really didn't know what they were doing!), ACTH, oral steroids, blood-washing (sort of like dialysis), chemotherapy (went bald and got skinny to 70 lbs.), diets, vitamins, exercise, you name it - they tried it on me.
All these were given a try because I was so sick and "listened" to docs who had far more education that I did. So I decided to get educated. After all, I was a 2nd year medical school student at diagnosis and had access to all kinds of information and libraries.
The problem was that there was not much information out there in the 1970's and early 1980's. By the time I got out of medical school, there was far more I didn't know and had to learn "on the job" through experience. That's why medicine is called a "Practice" - because it is practiced on people, etc. LOL
In medical school, it was not exactly wise to let them know what was going on with me for fear of getting kicked out of the program. Likewise, other people didn't come forward to share if they had MS or not, so essentially, I was alone in diagnosis. However, I knew any ideas of becoming a surgeon were blown - I couldn't trust my hands or my brain. But there was always "Research" which was a common comeback for students who failed an important test! I had not yet found my field, so I was interning in every department trying to find my niche.
I did not tell my family of diagnosis until the early 1990's. My husband was the only one I shared it with. It was easier to let others think anything else they wanted, because everyone had a preconceived notion of MS - negative and positive. To employers, I would be considered unemployable (not trustworthy) and I have been fired from a few places who did learn of my MS - even as late as 2001. (It's easier and less stressful not to pursue them legally, although I did for a while, but gave up the fight. I suffered physically trying to fight them.)
One professor of Neurology, who befriended me shortly after 1976 diagnosis, told me a piece of advice after three years of "therapies". It has been a gem.
"You can eat anything that grows below the ground, hangs off of a tree (not a vine), and drink anything that has vitamin value in it or added to it. That is the diet". As for medications, he said "the reason MS was called Multiple Sclerosis was because it was sclerotic in a lot of different places - hence multiple. You need to treat the inflammation until a cure comes along."
If something is sclerotic, it is inflamed. To cut down inflammation, acceptable treatment nowadays is a lower dose of IVSM than I was given in 1970's, followed by an oral prednisone taper. Eventually you were supposed to stop the prednisone after the taper, but I was already taking prednisone for Crohn's Disease. So I decided that the prednisone was what was making me feel better and it was just a matter of getting the dosage right so that I didn't hurt my bones, etc. Next, I set out to research how to protect my bones and my organs.
In 1980, after an IVSM 6 day dose, I started an oral prednisone taper that spread out over three weeks, eventually getting down to 10 mg a day (5mg in AM, 5mg in PM) which was my normal dose for my other disease. A flare here and there was treated with IVSM but at lower doses than what was practiced then. I did come off the protocol for short periods to go through fertility treatments and have two babies (1982 and 1984).
Remembering that my professor friend told me to watch out for my bones, I added Calcium Magnesium, Vitamin D3, and later years Fosamax. How much to add depends on your weight and extent of MS damage. A list of my meds is elsewhere in this post. No one told me before then to protect my bones. I'd been on prednisone since age 11. I can't imagine how much damage was already done to my bones!
How do you get on to a daily prednisone maintenance dose? It is easier to do this once you have been through a course of IVSM and a prednisone taper. Your maintenance dose may not be the same as my maintenance dose--- due to your weight, body size, and extent of disease.
Some doctors think three day schedules of higher dose IVSM are effective. Some doctors think six day schedules of higher dose IVSM are effective. In both cases, I hear patients complaining of IVSM effects.
My opinion - and it is solely my opinion - is that I really believe that 3 days high dose IVSM is not enough for anyone to get back to normal from a bad flare. So many docs feel 3 days high dose IVSM is enough, when I think 6 days lower dosage IVSM (as bad as it is) does a much better job. So many docs also do not use a prednisone taper AFTER IVSM, and that is sooooo important against rebounding and having to go through another IVSM round.
I feel that a lower dose IVSM over a longer period (6 days) is much more effective on a flare with an easier transition to prednisone taper. It is my opinion.
I request in home (but will go to his office if nec) 6 days IVSM for flares (overwhelming fatigue, can't walk well or at all, leg drags, foot drop, talking and thinking becomes compromised, fine motor skills - eating, holding things, are kaput) - the 6 days goes like this -
1000 mg spread out 4x a day (250mg each) for 3 days, 750mg spread out 3x day (250mg each) for 2 days, 500mg spread out 2x a day (250mg each) for 1 day. No need for massive doses unless you are hospitalized with a whole list of problems. Some docs order 1000mg four times a day, that's 4000 mg!!!! way too much - makes your brain fuzzy and alot of other stuff.
Since I get overwhelmingly overheated from IVSM, in addition to an ice pack, I also take 100 mg oral Benadryl an hour before each IV and that helps with the heat, itching as well as the other side effects, like sleeplessness, otherwise I'd be awake for the whole 6 days and bingeing on sugar! LOL.
When done IV, always do an oral prednisone taper. Docs who abruptly stop everything after IVSM leave patients who are very irritable, high strung, crying jags, and generally uncomfortable, wondering if their doc knew what they were doing.
My oral prednisone (after IVSM) schedule goes like this - Remember my last IVSM was 250mg, so I start with 100mg oral prednisone spread out between 5 doses (20mg at a time) a day for 3 to 4 days, 80mg spread out between 4 doses (20mg at a time) a day for 3 to 4 days, 60mg spread out between 3 doses (20mg at a time) a day for 3 to 4 days, 40mg spread out between 4 doses (10 mg at a time) for 2 to 3 days, 20mg spread out between 4 doses (5mg at a time) for 1 to 2 days, 10mg spread out between 2 doses (5mg at a time) for 1 day, which is back to my normal dose.
I sometimes have to increase my daily dose for a few days due to Crohn's complications, but I always taper back to my regular dose.
I have been doing this for years and it has worked for me very well. A good long taper keeps me from the bad effects of withdrawal from the high IV doses.
For anyone after IVSM use, oral prednisone should be 2 weeks minimum ....most docs order it for 3 weeks - this is a must after IVSM. Instead of stopping it on the last day, I continue it as my daily med.
It may seem like a looooooooooooong taper to you after 6 days IVSM, but it is worth it. Abruptly stopping after IVSM is bad, short tapers are not good, and often a person cannot notice the good that came from the whole therapy.
As I have written in other postings, I have 16 brain lesions since it was seen on my first MRI which wasn't until the mid- 1980's. They didn't have MRI's available before then, just CAT Scans, which didn't show how many lesions, just that there were areas of lesions. I also have 4 cervical lesions (C3-C7), 2 thoracic lesions. Only one small section of brain lesions have expanded slightly (gotten larger) on a 1999 MRI, the others remain unchanged. (Brain lesions compromise cognition, limb function, vision, sound (up and down). Cervical lesions at C3 to C7 compromise some of respiratory, but mostly for me, eating. Thoracic lesions compromise respiratory (breathing), swallowing, voice, and that dreaded MS hug.)
I have needed steroids since I was 11 years old, because I also have Crohn's Disease, which was treated surgically, then with prednisone, diet, loperamide (imodium) and later I added flagl. I was used to being on prednisone and I felt good on it to a certain degree.
For Crohn's flares, IVSM was also the treatment. Hearing that I had MS was only slightly worse than hearing I had Crohn's Disease. Then I was diagnosed with Rheumatoid Arthritis in 1986 - again prednisone was the treatment. So prednisone seemed to be the drug that I should stay on since it was what helped with the other two diseases.
I was sick of being sick on their "therapies." So I made some decisions. Clean up my diet which was crap because of my shift changes at work and try to clean up my sleep habits which was also crap because of my shift changes. That was the biggest hurdle. If I could get that much accomplished, the rest would be gravy.
But I had to get my body back to a starting point. After several hits of plasmaphoresis (blood washing, sort of like dialysis) to get the toxins out of my body and 2 or 3 rounds of IVSM - I finally got back to near normal although it took over a year to get there. Weight came back gradually.
I doctored only to get the meds I needed (IVSM or oral steroids, regular meds) to help me over the humps and to document the progression or lack of progression of my MS lesions.
It is a tremendous effort on my part, and not for people who don't want to do their homework, get up from the couch or go outdoors. It requires a rigid commitment to follow every day. And of course, it is not for everybody and I don't claim it will work for everybody. But those I have shared it with and have given themselves over to it have had good success.
It is not a cure all. It is simply a way to keep on keeping on without putting toxic DMD drugs into the body. I checked it out with every doctor I have been to - over 30 in 33 years (some quit me, I quit some and some plain old died). Those who disagreed gave me their reasons and I've filed it away for future information. I haven't used it yet.
Many MS'ers are taking DMD drugs and many are happy with that choice. If you are happy with your choice and feeling well, then I would stay with what works for you. The information in this post is just food for thought.
Since 1994, when DMDs first arrived on the scene, they have been pushed at me from the various neuro's I have been to and I have declined every time. I tell them what I am doing for myself, that I'm happy with it, that it has been working, and the concensus is "If it ain't broke, don't fix it."
I do use more steroids when needed to get over the humps and IVSM when it gets to be more than oral steroids can handle. But for the most part, I do not take any injectables, and the oral drugs I take are target (or disease) specific.
RA= Rhematoid Arthritis.
MS = Multiple Sclerosis.
Crohn's = Crohn's Disease (celiac and ileitis).
GERDS= Acid Reflux, stage 3, esophageal erosion.
Triglycerides = the part of your cholesterol that doctors holler about the most. I use Omega 3 Fish Oil to keep it under 200.
PRN = Taken as needed
- Multivitamin: 1 per day
- Vitamin A: 10,000IU/day (vision, immune function, protect against heart disease, anitoxidant)
- Vitamin B-12: 3000mcg/day time released (energy) doc recently increased this from 1500mcg/dayAtivan: 1mg/3x day and PRN (anxiety) Some days it is only two; if I am traveling in car, bus, plane or train, it is increased along with Requip so I don't vibrate in my seat with leg jumps and tremors.
- Vitamin C: 1000mg/day with bioflavinoids and rose hips - helps fight cell damaging free radicals that leads to oxidative stress, premature aging, promote immune system health. Rose hips helps with hair, nails and skin.
- Vitamin D3: 5000IU/day, in addition to 1 hr of sun outdoors per day
- Vitamin E: 800 IU/day - immune function and cardiovascular health, helps blood sugar, skin, hair, regulates vitamin A in the body.
- Calcium/Magnesium w/D added: 1500 mg/day (bones/ joints)
- Magnesium - 500mg/day additional, tinglyness, muscle cramps (leg, arm, neck)
- Niacin (Vitamin B-3): 400mg x 2/day for triglycerides
- Omega 3 Fish Oil: 1200mg/6AM & 6PM for cholesterol, triglycerides, immune function, joint health
- Selenium: 100 mcg/2x day vegetable formula, recently upped from 50, supports immune system
- Black Cohosh: 540mg/x2 - for hot flashes
- Co Q-10 w/phytosterols esters: 60/650mg x2 - (helps lower LDL and total cholesterol levels)
- Glucosamine/Chondroitin: 1500mg/2 per day (bones/ joints/ movement for MS & RA)
- Lipoflavinoid: 2 a day, takes care of the ringing in my ears.
- Allegra D: 60mg/2x day (allergies, rhinitis)
- Bentyl: 20 mg/3x day and PRN (Crohn's Disease, bowel spasm)
- Detrol: 2mg/ 2x day (bladder spasms/ urinary frequency)
- Fosamax: 70 mg 1x week (Bones, osteopenia)
- Imodium 4m; Phazyme 120mg: 4 to 8 times a day (gaseousness, Crohn's, intestinal spasms)
- Inositol Hexaphosphate: 1000 mg x 2/day for triglycerides, depression, to decrease insulin dependency; complications of diabetes
- Insulin: none - except while on IVSM as needed numb spots, Crohn's disease, malabsorption, high blood pressure, helps with exercise
- Meclizine: 25mg/2x day and PRN for vertigo
- Neurotin: 300mg/x2 day - one in AM and one in PM OR PRN (burning hands/feet, pain)
- Nexium: 40 mg/2x day for GERDS (increased to q8 hrs while on IVSM)
- Prednisone: 5mg with breakfast, 5mg with meal before 5PM (can cause insomnia if taken later)
- Prozac: 20 mg/day for depression
- Requip: 0.25mg/3x day for RLS Restless Leg Syndrome (1 in AM, 2 -an hr before bed)
- Zantac: 300 mg at bedtime (GERDS)
- Astelin Spray 2 sprays/seasonal – allergies
- Benadryl 50 mg/x2 with each IVSM dose (Hives, itch, flushing)
- Compazine: 10 mg/q6hrs – PRN nausea
- Insulin: 70/30 - for blood sugar spikes while on IVSM - if your vision gets blurry, test your sugar. IVSM and high doses of prednisone do cause high sugars, and it is treatable with short term insulin.
- Levaquin: 500 mg/x2 x10 days for UTI’s and other infections (i.e. respiratory, etc.)
- Prednisone: (in addition to daily) I use a sliding scale for flares of MS, RA or Crohn's Disease, followed by taper down to maintenance dose.
- Pyridium: 200 mg/q8hrs x 2days w/Levaquin - for burning urination
- SoluMedrol IV: low dose for 6 days for MS, RA, and Crohn's Disease exacerbations
- Tylenol 500 mg/x2 for joint pain
- Zanaflex 4mg/2 hrs b4 bed PRN – extreme leg spasms
I do not eat fried foods. I do not eat anything made or fried with butter, anything made with brown sugar or chocolate chips (my allergy), red meat - hamburgers in any form, any kind of beef, liver, exotic foods, spicy foods, citrusy foods (oranges, limes, lemons, grapefruit, etc. - due to Crohn's Disease) anything with soy products in it (Crohn's), sugar substitutes in food (yes to sugarless gum but usually only 2 to 3 times/week), alcoholic beverages (maybe once a year or so), cola sodas (that are caffeinated - root beer occasionally but that is decaffeinated).
I do not eat corn of any kind (corn on cob, popcorn, side dish corn at dinner, etc. - due to Crohn's Disease.).
I do not eat pizza or pizza products (acidity -over 25 years now), and due to Crohn's Disease - no smoked foods (lunchmeats, etc.), nitrates or cured foods (scrapple, bacon, baked or spiral hams), hot dogs (ingredients!!!), diet products (nothing that has additives or sugar substitutes - only low in calorie foods), red things (any red foods - strawberries, cherries, tomatoes (acid), beets (colon no-no), any kind of peppers, no apples (just plain no addititve applesauce), no greasy foods (or anything cooked in oil or fried), no fatty foods (just pork, white turkey, white chicken that are well trimmed and baked), no wheat products (Crohn's no-no) or oatmeal products, no bran or cream of wheat, nothing with cinnamon in it (allergic and it causes my UTI's), and I do not eat certain kinds of fish because of dislikes.
I do eat tuna, plain crabmeat, broiled flounder, broiled cod, white meat chicken in variety of prepared ways, meatballs made from ground turkey/pork combo, lean pork tenderloin, white meat turkey (dark meats are too greasy for me). I eat clear soups (no creamy), a lot of green veggies, carrots, non-wheat pasta (with little sauce but with sugar added to cut the acid), white potatoes (baked or mashed- a source of potassium), pot pies (read labels), white rice (can't eat brown rice - Crohn's no-no), and most kinds of non-wheat noodles.
I do eat about 5 bananas per day, every day, either alone or in smoothies - comes to about 10 pounds of bananas per week (helps keep away leg cramps and adds potassium so I don't have to take a pill for it). It put it in blender for smoothies and add to jello. I do eat cream of rice cereal once a week, buttermilk waffles - with margarine, little maple syrup, buttermilk pancakes once a month or so, white breads, scrambled eggs (1% milk -no butter), hard boiled eggs (completely cooked and often add them to salad), one cup of Tetley tea most mornings which is probably the only caffeine I get regularly.
Home made cakes, box cakes (read labels), only vanilla ice cream (it is a Cheat! used with Imodium chaser), smoothies (in blender usually with a banana, plain yogurt or ice cream, and 1% milk - again with meds), any kind of vanilla sandwich cookie (read label for wheat), vanilla wafers. I like chocolate but limit it to about 5 pieces of those mini-3 musketeers per week. Sometimes chocolate frosting on cake but I have to watch the oil additives because of Crohn's.
I drink bottled water because our water is so awful here. It is important to stay hydrated for general health, skin, hair, etc. but also because of the amount of supplements I take. So, I drink about 8 bottles (16 oz.) of water per day because I am constantly thirsty from the dry mouth side effect of some of my drugs (Detrol, Allegra, Prozac, Bentyl, Ativan). I drink one 16 oz. cup of hot tea every morning. If we go out to dinner, I may have a glass of Sprite soda with dinner, if I don't have a bottle of water with me (which is rare!) Smoothies - I throw whatever looks good in the blender, sometimes with a scoop of vanilla ice cream but usually yogurt.
If I cannot walk outdoors, I do floor exercises in the house - stretches mostly. I march in place, swinging arms at same time for about ten minutes - good cardio. When walking outside, I don't venture too far from home when alone, so I only do about a mile round trip now. When I have someone with me, we may go about 3 miles round trip....depends on what I am able to do. Last month, I joined a gym which has basic machines and try to go at least 3 times a week, for about an hour to an hour and half
If you have read this far, you are probably wondering what I do for the overwhelming fatigue that comes with MS. Vitamin B-12 helps a lot; some people get weekly B-12 injections and have found great relief. (Hi Debra!)
I have found that the patch you can buy that are called "diet patches" supply me with enough energy, but not too much so I don't get the jitters. The ad testimonials will tell you that a lot of people are happy with their weight loss, (some aren't) but all seem happy with the energy level - which of course is the part that I am interested in. I use Le Patch, but you can get them under other names too. Again, this is what works for me. I don't like taking diet pills of any kind, so the patch works well.
I get a 3 month supply for about $50 free shipping, and because I cut them in half, they last about six months or more. I usually put one on in the morning and leave it on until about 3PM, when I start getting dinner ready. We eat early around here, usually before 5PM, and I am sitting up in bed by 7PM watching TV or reading until 10PM.
I have a whirlpool tub in the bathroom and sometimes I just fill it with tepid water, get my book and sit in the bubbly water and read for a couple of hours. Hubby has to get up at 4AM for work and the bedroom light bothers him sometimes, so I often hit the whirlpool. At the end of the day, it is so refreshing and relaxing.
I rarely take an afternoon nap. The reason I take the diet patch off at 3PM is because it can restrict your eating habits to a certain extent and I like to eat dinner with hubby. But the main reason to take it off at 3PM is it gives me that few hours of "wind down" time before bed.
If I have a late night coming (like my four times a month 11PM -7AM hospital shift), I will get a nap and wake up around 8PM and put a patch on for the night shift. It really helps me with energy in addition to the supplements that I take without having to take another pill for it. There are some days I don't use it at all, and if I find myself wanting to go out for a long afternoon/evening or something, then I will put one on to get through.
Also, because I get overheated at work due to the fast pace required in my job, I take a small frozen ice pack to work with me (one of those packs that looks like a small juice box), wrap it in a paper towel and put it between my bra and skin. Sometimes I forget to bring it and I have used one of those ice packs EMT's crack when they need to put cold on an injury and I wrap it in paper towel. Cools me right down and no one knows it is there. Cooling vests are a good find for some people, but I choose not to use them because they attract attention to me, which I do not like.
So, to date, this is what I do for me. That does NOT mean it is for everyone. It is what works best for me. Everyone is different - I have gluten issues whereas you may not. In regard to the supplements that I take, this has been fine tuned over the years and I have been feeling pretty well.
My MS regimen does change due to the ever changing disease of MS. It has to be tweaked occasionally. And increased physical workouts (or decreased) depends on MY physical condition to be able to do it. Sleep (or rest) patterns change weekly. And my dosages of pills changes depending on my physical well being.
I have added more Nexium when the GERDS gets worse, due to the Solu-Medrol and prednisone taper. So I up it to 3 or 4 a day until a taper is done, then back to two a day. I add more Glucosamine/Chondroitin when my RA is acting up - probably due to the four season weather here. My Crohn's Disease is kept in check due to daily meds, diet, rest, and to the adjustments with the steroids.
Depression is part and parcel with MS but it has been baggage for me since I was a young child. They had more vicious names for it then. NOW, I love my Prozac and nothing comes between me and my Prozac! If Prozac doesn't work for you, find something that does. Anyone with MS will eventually deal with depression and there is no reason to suffer with it.
Keep MS in balance is an oxymoron because balance affects MS. Staying balanced in diet in almost impossible because we are human. But we must at least try.
I try to get annual MRI, as well as a Dexascan for my bones; sometimes I am off by a month or two but usually I am on target with the time.
In 1976, no one ever presumed MSers would live ten more years after diagnosis, much less thirty years, before it progressed to the "totally disabled" level. There are quite a few MSers out there who have had MS for over 25-30 years. If you are one of them, I'd love to hear (read) your story, especially what treatments you had at that time.
This concludes the 56th edition of the Carnival.
Wednesday, February 24, 2010
So you are thinking about whether to participate in a clinical trial? There is much to know in making your decision. In the past few weeks, we have been discussing many of the the important things you need to know (see Part One and Part Two). In this post, we will explore aspects of participating in a clinical trial.
As often promoted, patients who participate in clinical trials may gain access to new treatments before they are widely available, help others by contributing to medical research, and receive trial-related medical care. But not everybody is eligible to participate in any clinical trial. There are inclusion/exclusion criteria which come into play based on such factors as "age, gender, the type and stage of a disease, previous treatment history, and whether you have other medical conditions."
Inclusion/exclusion criteria make sure that researchers will be able to answer the specific questions posed in the trial protocol. Some research studies need participants with specific illnesses or conditions to be studied in the clinical trial, while others need healthy participants.
Read this post in its entirety:
Monday, February 22, 2010
As you have been following my Rituxan story, I have been sharing information about my personal experience in receiving this infusion medication for RA, any reactions I had to the infusion (see part one), and any benefits I’ve seen from the infusions (see part two). This month I’d like to share the expenses involved.
Like many of us, I like to know the cost of something BEFORE I commit to purchasing. After receiving the ‘go-ahead’ from my rheumatologist and my neurologist for starting Rituxan treatment, I needed to find out what my out-of-pocket costs were going to be and find a pharmaceutical assistance program to help with those.
My first homework assignment was to find out which hospitals my insurance company would pay for outpatient infusion therapy and to discover if I needed a chemotherapy preauthorization ahead of time. A call to the insurance company came first and I was pleased to discover that each of the local hospitals were equally satisfactory to my insurance company. No preauthorization was necessary.
Read this post in its entirety:
Navigating Costs and Insurance for Rituxan (Rituximab)
Note the update for this story. It is not over, but I hope to have good news soon.
Sunday, February 21, 2010
Most everything these days. I live with multiple chronic illnesses - multiple sclerosis, rheumatoid arthritis, and dysthymia. I write on topics related to health, including living with chronic illness. I unofficially counsel other patients who live with chronic illness. Besides my life as a musician, music teacher, daughter, girlfriend, and kitty mommy, I am practically a professional patient.
In a perverse way, it is fortuitous that I live with multiple chronic illnesses. Let me explain.
I began using Rituxan as a treatment for rheumatoid arthritis last November/December. Rituxan has been studied as a treatment for multiple sclerosis. The results of the clinical trials were promising and successful, but Rituxan will not be studied further for MS, thus it will never be an FDA-approved treatment for MS. Instead its monoclonal antibody siblings - ocrelizumab and ofatumumab - are being studied in MS.
Last fall when I first approached my rheumatologist about trying this medication, I knew full well that it could possibly help my MS. When my rheumatologist called my neurologist to get his opinion on the matter, my neuro was thrilled. "That's great!!" As soon as my rheumy got off the phone with him, she called me and said it was a go.
This Friday I saw my neuro for the first time since the infusions. I wasn't sure if he wanted me to go back on Copaxone so I needed to ask. (He had wanted me off Copaxone before the Rituxan infusions.) The answer - no more Copaxone.
He referred to what we know about the risk of PLM when Tysabri (a monoclonal antibody) is combined with other MS immunomodulators. Rituxan carries a much smaller risk of PML (progressive multifocal leukoencephalopathy) but he would prefer not to test the risk with combination treatment....and I'm also on methotrexate anyways.
"You're on some powerful drugs. Your MS is covered."
My neuro outright said that he'd love to prescribe Rituxan for MS but that insurance companies would never approve it. We joked that I might be his guinea pig. LOL.
I can say with confidence that my RA is better since the infusions. So far I can't really speak to the effect on my MS, however I am requiring less neurontin for MS-related pain lately.
One thing which is concerning though is that during the exam we discovered that I am REALLY much more numb than I have ever been on my right leg and torso. Big surprise to me. I could hardly feel the pin pricks AT ALL.
Combining the numbness (all four limbs plus torso) with my lousy balance and dragging leg, my neuro nurse suggested that we just caught me in a down swing (but not one worth calling a relapse). At this point, I've almost forgotten what my original "baseline" ever was. Hopefully Rituxan will keep me from having to readjust my baseline at a higher degree of dysfunction each year.
"What's Illness Got To Do With It?"
The irony is that without an RA diagnosis, I would never have access to Rituxan. And since Rituxan is delivered by infusion it is covered under major medical and not under my pharmacy benefits (which are capped at $1500 yearly in my insurance plan). I'm much better off financially using this treatment which is an extra blessing.
The perverse reality is that I am now glad to have RA. Without it, my treatment choices would be limited. So illness has everything to do with it. :)
Friday, February 19, 2010
The serious snowplows finally came through Tuesday and completely wrecked the work people had done clearing access to their driveways or places to park on the street. It was a nasty surprise for many who came home from work and had no place to put their cars without lots more digging.
But then the frontloaders and bobcats came through Wednesday night and Thursday morning. Finally our street is safe and drivable; the difference is night and day. Only 11-12 days after the first storm hit but we're part of the world again.
So Thursday, I went out and got a HAIRCUT which was sorely due. And Thursday afternoon I spent several hours taping and editing some videos which will go up at HealthCentral as part of our honor of MS Awareness and Education Month.
I had three kitties who ventured in and out during this time. They love the music studio and with the skylights, it's a better place for me to film. Well, Oscar was creating the effect of an earthquake everything he rubbed up against the tripod. He does weigh 13 pounds ya know.
So we gave him some of the limelight. Meet Oscar, who one year ago was homeless.
Wednesday, February 17, 2010
In Clinical Trials: What You Need to Know, Part One, we discussed types of trials which are conducted as biomedical or health-related research studies in human beings. These trials, including interventional studies and observational studies, are designed to follow a pre-defined protocol.
A protocol is a study plan on which all clinical trials are based. The plan is carefully designed to safeguard the health of the participants as well as answer specific research questions. A protocol describes what types of people may participate in the trial; the schedule of tests, procedures, medications, and dosages; and the length of the study.
Ideas for clinical trials usually come from researchers. After researchers test new therapies or procedures in the laboratory and in animal studies, the experimental treatments with the most promising laboratory results are moved into clinical trials. During a trial, more and more information is gained about an experimental treatment, its risks and how well it may or may not work.
Clinical trials are sponsored or funded by a variety of organizations or individuals such as physicians, medical institutions, foundations, voluntary groups, and pharmaceutical companies, in addition to federal agencies such as the National Institutes of Health (NIH), the Department of Defense (DOD), and the Department of Veteran's Affairs (VA). Trials can take place in a variety of locations, such as hospitals, universities, doctors' offices, or community clinics.
Read this post in its entirety:
Tuesday, February 16, 2010
Beautifully done and powerful!!
No Protection = No Sex
From an Aids Awareness Campaign - Definitely NOT safe for work or young eyes!!
Monday, February 15, 2010
Weren't we just recently talking about diagnostic criteria and the impact of "earlier diagnosis"? That and the Will Rogers Phenomenon....
New Diagnostic Criteria for Multiple Sclerosis Published
(by Allison Gandey, Medscape Medical News)
February 12, 2010 — Investigators are proposing new diagnostic standards for multiple sclerosis in clinically isolated syndromes. Their criteria are less stringent than other proposals and are designed to improve sensitivity to promote early diagnosis.
The authors report they wanted to simplify existing diagnostic criteria for multiple sclerosis. The group, led by Xavier Montalban, MD, from the Hospital Universitari Vall d'Hebron, in Barcelona, Spain, suggests current recommendations are complex and that "a good working knowledge of them is not always evident even among neurologists and neuroradiologists."
They point out that multiple magnetic resonance imaging (MRI) examinations are often needed to achieve an accurate diagnosis.
"This provides an incentive for continued efforts to refine the incorporation of MRI-derived information into the diagnostic workup of patients presenting with a clinically isolated syndrome," they note.
The new criteria appear in the February 2 issue of Neurology.
- Clinically definite multiple sclerosis can be confirmed if a MRI is performed at any time demonstrating dissemination in space and showing at least 1 or more asymptomatic gadolinium-enhancing and nonenhancing lesions.
- Patients without any enhancing or with all enhancing lesions would require a new MRI to demonstrate new T2 or gadolinium-enhancing lesions.
- Patients with an abnormal MRI performed at any time, but not showing dissemination in space or time, would require follow-up imaging.
"We recommend 1 dissemination in space criterion," the authors note. This would represent 1 or more asymptomatic T2 lesions in 2 or more of 4 locations considered characteristic for multiple sclerosis in previous MRI criteria — juxtacortical, periventricular, infratentorial, and spinal cord.
"We recommend 2 dissemination in time criteria," they add, and call for the presence of at least 1 or more asymptomatic gadolinium-enhancing and nonenhancing lesions irrespective of the time of the scan and the presence of a new T2 or gadolinium-enhancing lesion compared with a previous scan.
Asked by Medscape Neurology to comment on the new criteria, Gary Birnbaum, MD, from the Minneapolis Clinic of Neurology in Golden Valley, Minnesota, raised some concerns about the effect these recommendations could have.
"The proposed criteria are less stringent than other criteria, possibly increasing the sensitivity of detecting conversion to clinically definite multiple sclerosis, but possibly decreasing the specificity of the changes," he said. "This will need to be monitored carefully."
Increasing the Risk for Misdiagnosis
Dr. Birnbaum says the data supporting early treatment of multiple sclerosis are good; however, he suggests that not all patients with clinically isolated syndrome need, or necessarily benefit from, treatment with disease-modifying therapies.
This will need to be monitored carefully.
"Indeed, recent long-term data show that more than 30% of persons with 'high-risk' MRI changes do not have significant disease after 20 years of follow-up," he said. "There may not be a great urgency for establishing a diagnosis of clinically definite multiple sclerosis in a significant proportion of individuals with clinically isolated syndrome, especially if the specificity of criteria are less stringent — increasing the risk of misdiagnosis."
Dr. Birnbaum points out there are many disease-modifying therapies already approved for the treatment of patients with clinically isolated syndrome. "If a physician feels there is a need to begin treatment early, conversion to clinically definite multiple sclerosis is not necessary to prescribe such agents," he said.
More Study Needed
Dr. Birnbaum emphasizes that having less stringent MRI criteria for establishing disease progression may not be necessary and could increase the risk of treating people with diseases other than multiple sclerosis.
Ben Thrower, MD, a neurologist and senior medical advisor for the Multiple Sclerosis Foundation, said he agrees there are risks involved in early diagnosis. This could lead to inaccurate diagnosis or patients starting therapy with expensive and inconvenient medications, he suggests.
However, Dr. Thrower also acknowledges the benefits of early diagnosis, including peace of mind for patients and families dealing with unexplained symptoms. He points to data suggesting fewer relapses and new MRI lesions in those who start therapy sooner.
"These new proposed guidelines offer the possibility of using a single MRI to fulfil diagnostic criteria," Dr. Thrower said. "If the brain MRI shows lesions with and without active inflammation, this would demonstrate dissemination in time and space."
Dr. Thrower says the new criteria will need to be studied further and compared with existing McDonald criteria to determine whether they are sufficient.
Dr. Montalban and his team acknowledge that testing these criteria in new, prospectively followed clinically isolated syndrome cohorts is needed.
They also point out that scans in most studies have been performed on 1.5-Tesla or lower field-strength scanners using conventional T2-weighted spin echo or fluid-attenuated inversion recovery sequences.
They note, "The impact of 3 Tesla or higher field MRI findings or other MRI sequences on diagnosis will have to be considered in the future."
Dr. Xavier Montalban has received support from Novartis, Teva, Merck, Biogen Idec, Bayer, Schering Pharma, Sanofi-Aventis, Almirall, Eli Lilly, Genentech, Genzyme, Wyeth, and Fundació Esclerosi Multiple.
Neurology. 2010;74:427-434. Abstract
Medscape Medical News © 2010 Medscape, LLC
Sunday, February 14, 2010
When we think of clinical trials, the image of pharma-sponsored drug trials immediately come to mind. Perhaps this is because we hear most about drugs in trials, drugs which have been tested for use in MS, and drugs which receive that important FDA approval before hitting the market. But drug trials are not the only types of clinical trials.
Clinical trials fall into several categories, including:
Treatment trials: These studies test new treatments for diseases or conditions. These treatments can include experimental treatments, new drugs, new combinations of drugs, or new approaches to surgery or radiation therapy.
A treatment trial may also study "off-label" uses for an existing FDA-approved treatment. Off-label means the drug is being tested as a treatment for a different condition (or indication) than the drug was originally designed and approved to treat.
Screening trials: These studies test for the best ways to detect diseases and conditions. These trials involve participants who have no symptoms of the condition and can be done on the general population. Or they can be done on a group of people who have a higher than normal risk of developing a disease.And more.....
Read this post in its entirety:
Clinical Trials: What You Need to Know, Part One
Thursday, February 11, 2010
At the MS gym that I am now a proud card carrying member of, which I never saw coming due to my negative preconceived notion about it, they are making a quilt to raffle off as a fund raiser for the gym. They want everyone who is so inclined to to take a square, make a design that represents them and how they feel about MS, how they deal/fight it, and write why they chose that design. I took a big square and a little square, not out of greed but because they want people to make both if that is their wont, and it is my wont. I puzzled over what I would do. I tossed around different ideas, like making a big friendly dog with a blank look, because that is how I feel when I go in there. I go in happy to see everyone and feel like I slobber all over them, which I probably do but they are too nice to tell me so. I finally came up with my idea and am now going to share it with you. No need to thank me; I'm generous like that.
I am going to make on the big square the Chinese sign for courage and on the little square the sign for hope. I have always said that for me having MS is more about courage than hope, and if I ever get another tattoo -- highly unlikely, the 2 I have are more than enough -- I would get the symbol for courage.
Hope is all well and good in a passive kind of way. I do have hope for the future and what may come of studies about MS, but I can't put all my diseased eggs into that basket. I do not foresee a cure for MS in my life time and can only hope for better drugs to help slow it down. I hope for medicines with better efficacy and with less side effects to come down the pipelines soon, but don't want to pin all my hopes on that lest I be disappointed when they do not come down that clogged pipeline.
Courage is active and I like active. For me, hope is sitting back and waiting, whereas courage is facing what is. Do I have the courage to face what this disease has done and most likely will do to me? Some days I do. Other days when I think about what the future may hold for me, I lose my courage and get scared. Then I start wrestling with the "what ifs," which I HATE and try to remember that I need to deal with what is right now and worry about the possible outcomes when they come. I want the courage to look this disease in the face without flinching. I want the courage to deal with what may come and to accept it with grace. The courage to deal with how the public may react to me -- mainly because I struggle with that some days and want the courage to go out even on my worst days instead of hiding at home. This is a scary disease and I think "courage" should replace "hope" as our catch word. It takes a lot of courage to face this disease and I need as much as I can get. I don't want to be the Cowardly Lion anymore.
by Laura of Shine the Divine
You've probably heard people say go to your "happy place" before. Perhaps for you this "place" is by the sea, on top of a mountain, deep in a forest or by a crystal clear lake. Maybe it is in a cozy room warmed by a fire and you visualize yourself tucked in with a soft blanket. Your "happy place" might be different depending on the moment. Go to your "happy place" is an instruction to turn inward, toward a heart and mind space of calm, safety and joy...a place we visit for sanctuary when we are upset, when life feels overwhelming. This past week I found a new "happy place". This was a real happy place (as opposed to imagined) that buoyed my inner space to immediate joy and relaxation!
I spent an hour riding through the countryside and surrounding villages near my home. (I know, I know, "only drive for 20 minutes at a time"...but I took lots of pictures, so I reasoned that I was resting every time I stopped.) The truth is, I was getting tired. I was also noticing some anxiety arising as the fatigue was growing. Anxiety adds another layer to the tiredness, decreasing my ability to pay attention when driving. This combination has a potent impact on the functioning of my neurons. Just then, I noticed a sweet looking spot to stop, rest and refuel.
A bakery I had never noticed before. I parked my car, right next to the door, got out, took in a deep breath of spring-like air (we were having a few days of thaw) stepped inside the shop, leaning wearily on my cane. WoW! I felt like I had been transported to a realm of pure sensory delights. The aroma, the golden glow of fresh warm loaves, ahhh, these were not just any loaves. The sign in the parking lot said artisan bakery; these were well crafted works of art indeed. Elegant antler-like baguettes stacked, round loaves dressed with spirals of flour piled in baskets, a perfectly placed sprig (I think it was cilantro) and garlic, like a bud emerging from the center of one particularly striking doughy mound. Edible art. Did I mention the variety of grain combinations and all the seeds texturing the surfaces of the loaves yet? Or unusual dried fruits like figs, baked right in? I have never been the kind of woman to turn down fresh bread (even while others are scooping out the center of their bagels to save on carbs)...I LOVE BREAD! Just don't ask me to bake it myself...it is always, always a disaster. Ask my kids...no, never mind, don't ask my kids. They will surely tell you scary details about my lead-bread escapades of the past.
So, me being me, I asked if I could take some pictures of their comely loaves because they were so astonishingly beautiful. Go figure, the baker said, "Yes, of course." Hard to know from her smile if this was a regular request, but clearly it made her happy. I went out to the car, put down my glasses, picked up my camera, hobbled back in.
How to snap a photo while using a cane: Set the cane against a table. Position yourself to take stunning pictures of artistically arranged, painstakingly designed, deliciously baked bread. Voila.
Did I mention the scones with sharp Vermont cheddar & chives? I had to purchase some bread to be sure it was as mouth-wateringly delicious as it appeared to be. Again. WoW! These weren't just Good "looking" Loaves.
A cup of Jasmine tea in my left hand, camera in my back pocket; I balance tea, scone and loaf of fresh bread for dinner in hands while somehow opening the car door. Drive home. Rest until the kids return from school. Oh, no. One needs picking up. Get Belin. Drive her to PT. Park in handicapped space. Uh, oh, I forgot to bring my cane to PT. I'm tired, but I can manage, as it is not too far to the elevator and then the correct office. Drive home, debating in my mind...I would love some home-made vegetable soup to go with that bread with the roasted pumpkin seeds for dinner...I'm way too tired and it's too late to put up a pot of soup now. Drive a bit further than planned to purchase soup for the family from a favorite cafe to take home with us. It is now dark and I am really nervous about driving in the dark. My hands are numbing up...my right ankle painful. So much more for my now exhausted brain to process. But we make it home fine, and everyone is delighted by the gift of artisan bread, the best part of dinner.
Fast forward. I cannot find my cane anywhere. It's been 3 days. I've looked and looked. I figure, well, part of having MS (at least for me) is forgetfulness. I probably need to have several canes; this is going to happen sometimes. Some days I need the added assistance of a cane other days I don't, but I have to have one on hand always for the days I do. I say to Gord, "We better pick up a new cane today, maybe several...(I laugh at myself-I was always one to misplace things like keys for example...but a cane is a lot bigger and easier to spot than a set of keys...this is beyond my pre-MS forgetfulness). "Lets play hooky from life this morning" I suggest, "and go for a pretty drive before running errands"...and Gord says, "Show me where that bakery is while we are out."
We take a drive-I'm achy as it's -1F when we leave the house. My neurons are not appreciating the severe cold. I'm grateful to be a passenger, now that we are back to "normal" January temperatures. I snap some lovely photos (to post sometime in the future). We both feel relaxed and happy, joy riding on this cold, clear January morning. I actually remember where the bakery is located and we stop. He is as delighted as I was the first time I stepped inside. My heart sings on the second visit as well. We carefully select a hardy, crusty rye and two more of the cheddar & chive scones and tea (a light morning snack). I chat with the cashier in a friendly way. I don't know why, but for some reason, I look down and to the left edge of the counter. There it is, my cane, just hanging there next to the register! I say, "Hey, that's my cane, I've been looking everywhere for it!" The young woman looks at me more carefully, perhaps remembering my face or that I took photos (or maybe my unique accent). "Yeah, we thought it was some kind of miracle," she laughs, "person walks in with cane, tastes our bread and walks out healed."
I thought about this. In a way it was true. I walked out of there last week with a full, contented heart. I had been to my "Happy Place". I was distracted by JOY, and perhaps too many things in my hands to remember the cane. It was a healing of sorts. Temporary, as I really needed my cane that second morning, as fortune smiled and I found it again...but the lingering memory of the fragrance, warmth, colors and shapes of the breads in the bakery...this will be a healing place, a "happy place" to go to in my mind for a very long time.
Do you realize how many clubs in this country have no volunteer members? Club Med is not one. People go there to have wild sex, sun on the beach, have wild sex, enjoy fine dining, have mild sex, drink to excess, have WILD SEX, speed on wave runners, have a little sex, stay for seven days, return home, and have no sex. My wife and I belong to Club MS, a member of the Corporation of Chronic Diseases. Some of the other club members are: MD, MLS, Parkinson’s, diabetes, heart conditions, kidney conditions (also known as club dancing with dialysis), and club failure to thrive.
Corporate headquarters sends manuals to all new members and establishes the rules, regulations, fees, dues, laws, by-laws, fines, symptoms, all handicap aspects, misery associated with each, financial hardship, emotional stress, psychological breakdowns, marriage break ups, friendship ending, and relationship trauma. Hope you noticed there was no wild sex mentioned. Their sole purpose is to make all members totally miserable. Their motto is “We wouldn’t kill you, but we will make your life miserable.” The members of these clubs have many many problems dealing with their new club. All their freedom has been taken away. Independence is robbed quickly or slooowly. Their dependence on other people increases over time. They hate their disease. The members have no recourse but to deal with these issues.
“I just love the word issues. As a matter of fact I wrote a blog on issues.”
“Stop it! You are writing about a very important topic. You cannot go off on a tangent.”
“Okay! Okay! You are right.”
“Do you realize how many people in the world have these diseases? They are not laughing and take their disease very seriously. So get back on point and help these people out. The people don’t want to get more depressed reading about what they already know. Insight is what they want. So give them some of your vast experience regarding how to cope better.”
“No, it would take too long. I have an idea though. I could tell them a few stories about my wife, myself, and our third wheel (pain in the ass MS).”
“That’s better. Go for it. Make them laugh.”
“Okay, here we go.”
No more advice, about why, when, where, and how to cope with your disease. “I lied. LAUGH, LAUGH and LAUGH, some more is my advice. I hope you noticed I really screwed up on the last laugh. I love to see the red squiggly line under the words. It drives spell check crazy.”
Let’s see. My wife and I joined Club MS 20 years ago. Along with the membership card we received a 200 page manual, with the rules, regulations and an MS pamphlet titled “All the miseries you will be exposed to.” Someone from the kidney club told me their manual was 300 pages. “Boy we were lucky, I think?” We also got a new partner Ms. MS. She came absolutely free and shipping was included. Notice I have given her a title as she is still single. If MS was floating around in me it would be Mr. MS. Anyhow, she loves hanging around with me and the wife.
MS was kind enough to bring her girl friend Ms. Fatigue. They hang around together all the time. Fatigue is not our partner like MS. She is MS’s implementer, her main function is ruining our plans, and she has been highly successful. Not anymore. No! No! No! We called Ms. MS on her cell phone ten years ago and had a heart to heart with her. We told her we were going to do what we wanted when we wanted. Ms. MS who is always cool, calm and collected immediately consulted the manual and launched the following plagues on my wife.
The B&B plague (bladder and bowel)-75% success, FMS (fine motor skills ka-put)-97% success, D plague (dizziness permanent, now a dizzy broad)-99% success, CSAFMTAM (Can’t Stand Alone For More Than A Minute, this forced us to cut back on the dancing)-90% success, CNLC (Can No Longer Cook, I have that privilege now, lots of PB&J)-95% success, NLCDLMV ( No Longer Can Drive Large Moving Vehicles, had to give up her job as a crane operator, oops it was a bulldozer, no a steamroller, darn wrong again it was a massive destructive machine on wheels, forget it she can no longer drive)-100% success, V plague (Vision is poor. She can see no see-ums, but not airplanes. Go figure)-90% success. Ms. MS’s success rate was over 95% and in only 15 years was sitting on top of the world. The only kink in her armor was my wife’s walking. Reaching into her bag of plagues she sent out the W plague (WALKING).
Fifteen years we took all the plagues and never fought back. That would have been stupid on our part. We called Ms. MS on the cell again, got her voice mail, left a message, and are still waiting for her call. We needed help so we decided to go see The Great Houdini (Oops, he is dead). Instead we consulted The Shaman of Medical Healing (also known as Carlin the Chosen Neurologist). Over the years his advice and knowledge has been priceless. This time he was at a loss for words. He knew my wife was having problems walking and this concerned him. Then he revealed to us that Ms. MS had contacted him via cell and asked for his assistance. She was afraid my wife would get injured if she fell down, and was in desperate need of some type of medical device.
Ms. MS doesn’t really care about the people she has entered. When one of her plagues fails she will do anything to succeed. The Chosen had not seen my wife walk alone in a number of years and brought her out into the hall. Moving along the wall she walked to the end of the hall and back. Returning to his office he said,” I think it would be beneficial if you got some kind of medical device to help you walk.” He then offered my wife the following; cane, crutches, Canadian crutches, walker, rolling walker, wheelchair, electric wheelchair, scooter, electric scooter, go cart, hover round, wave runner, boat, speed boat, wagon, horse, carriage, and finally a pile of pillows attached to her body. Taking out his prescription pad he looked over at my wife and waited. Giving him the dagger eyes (when you get the dagger eyes usually your life flashes before you) my wife replied, “I have my walls.” Shaking his head he replied, “Guess this isn’t the time for an assistive device.”
That was five years ago. Ms. MS was infuriated and had to contact corporate. Corporate was not pleased and first sent Fatigues twin brother Mr. Exhaustion. He had a few successes but was defeated and left. My wife was still walking in our home. After eighteen years corporate was at a loss. This had never happened before and an immediate board meeting was convened. After three days of deliberation their only option was to call in MR. EXACERBATION. He had never failed and was feared by the MS members. The stories surrounding him are legendary. He came, set up shop, and after a few days of observation proceeded to throw the kitchen sink, stove, refrigerator, microwave, tub, living and dining room furniture, all electronics, and the clothes hamper at my wife, to no avail. My wife got up, brushed herself off, looked him in the eye and said, “NAH! NAH! NAH! NAH! NAH! NAH! NAH! NAH! HEY! HEY! HEY! GOOD-BYE.”
Ms. MS still slinks around and plans. Ms. Fatigue now has a strong hold and often goes to Club Med on vacation. I wonder if she has wild sex. Does Fatigue and sex belong in the same sentence? Oh, well. We still see The Chosen, my wife walks around the house with her walls and me her walking wall, club MS is threatening us with yearly membership fees (fat chance) and every time my wife walks it pisses off her partner Ms. MS. Oh well we will always belong to club MS, but it could be worse.
With kindest regards, Judowolf
This concludes the 55th edition of the Carnival.
Wednesday, February 10, 2010
Winter Olympics in My Backyard
(written before the 2nd blizzard in one week to hit the DC area)
Stayin' Alive - Resting Metabolic Rate
(how many calories does your body need to function?)
My Favorite Egg & Cheese Sandwich
(how can we easily create lower calorie meals?)
Thanks for your support. I really appreciate it!!
She had posed the question:
Love? Hate? What are the four letter words you use to describe your life with chronic illness?The variety of responses are wonderful. Do go read and discover some great chronic illness bloggers.
Tuesday, February 9, 2010
Included are community health clinics and hospitals, public hospitals and academic institutions, Hill-Burton facilities, government programs, prescription assistance programs and the Patient Advocate Foundation.
Read this post in its entirety:
A Guide to Medical Services for the Uninsured
Monday, February 8, 2010
First, the article abstract:
The Will Rogers phenomenon: the effect of different diagnostic criteriaHow was MS diagnosed decades ago versus now?
by Maria Pia Sormani in the Journal of the Neurological Sciences, Volume 287, Supplement 1, Pages S46-S49 (December 2009)
The ‘Will Rogers phenomenon’ is an apparent epidemiological paradox named after a remark made by the humorist Will Rogers about migration during the American economic depression of the 1930's: “When the Okies left Oklahoma and moved to California, they raised the average intelligence level in both states.” In 1985, Alvan Feinstein proposed the name ‘Will Rogers Phenomenon’ to describe the ‘stage migration’ he observed in patients with cancer.
Changes in the criteria for assigning patients to the various stages of a disease can produce spurious improvements in stage-specific prognosis, even though the outcome of individual patients has not changed. In oncology, new imaging tools allowed detection of cancer metastases before they became evident clinically. In consequence, more patients are classified into the more severe metastatic disease stage from the less severe single tumour stage. Such a ‘stage migration’ resulted in an improved survival of patients in both the less and the more severe disease stages.
Multiple sclerosis is also subject to the Will Rogers phenomenon since the introduction of the imaging-assisted McDonald criteria. Given the sensitivity of magnetic resonance imaging for detecting disease activity, which is believed to be five to ten times greater than that of clinical assessment, the McDonald criteria are expected to allow earlier diagnosis, hence the ‘stage migration’ relative to the previous Poser diagnostic criteria.
Because of the ethical problems associated with carrying out placebo-controlled trials in multiple sclerosis owing to the wider availability of therapeutic options, the use of historical controls groups remains an attractive option. However, the Will Rogers phenomenon, which is recognised as one of the most important biases limiting the use of historical controls groups in experimental treatment trials, compromises the interest of this approach.
In this context, the use of different diagnostic criteria may generate spurious improvements in the medium-term prognosis of multiple sclerosis, which may be wrongly interpreted as treatment effects.
In 1965 Schumacher established a set of diagnostic criteria which are still commonly used by neurologists to make a clinical diagnosis of multiple sclerosis. The Schumacher criteria relied entirely upon clinical signs and symptoms:
- Neurological examination reveals objective abnormalities of central nervous system (CNS) function.
- History indicates involvement of two or more parts of CNS.
- CNS disease predominately reflects white matter involvement.
- Involvement of CNS follows one of two patterns:
- Two or more episodes, each lasting at least 24 hours and at least one month apart.
- Slow or stepwise progression of signs and symptoms over at least 6 months.
- Patient aged 10 to 50 years old at onset.
- Signs and symptoms cannot be better explained by other disease process.
The Schumacher criteria led to the development of the following designations:
- Clinically Definite MS was made if all the Schumacher criteria are fulfilled.
- Probable MS refers to RRMS symptoms where only one neurological symptom commonly associated with MS is found or if there is only a single attack and there was no better explanation for the symptoms.
- Possible MS refers to RRMS symptoms without documented signs or where the objective signs are insufficient to establish more than one site of CNS involvement.
The Poser criteria and designations are:
- Clinically Definite MS
- 2 attacks and clinical evidence of 2 separate lesions
- 2 attacks, clinical evidence of one and paraclinical evidence of another separate lesion
- Laboratory supported Definite MS
- 2 attacks, either clinical or paraclinical evidence of 1 lesion, and cerebrospinal fluid (CSF) immunologic abnormalities
- 1 attack, clinical evidence of 2 separate lesions & CSF abnormalities
- 1 attack, clinical evidence of 1 and paraclinical evidence of another separate lesion, and CSF abnormalities
- Clinically probable MS
- 2 attacks and clinical evidence of 1 lesion
- 1 attack and clinical evidence of 2 separate lesions
- 1 attack, clinical evidence of 1 lesion, and paraclinical evidence of another separate lesion
- Laboratory supported probable MS
- 2 attacks and CSF abnormalities
The McDonald criteria helped to establish a new diagnostic category for persons who have experienced only one relapse (or exacerbation) of MS-like symptoms, a Clinically-Isolated Syndrome (CIS). A person with CIS may or may not go on to develop MS which raises some controversy and confusion to the diagnosis and treatment of MS.In 2005, the McDonald criteria was revised to help demonstrate dissemination in time, to clarify the use of spinal cord lesions, and to simplify diagnosis of primary progressive disease. The 2005 revisions were designed to simplify and further speed diagnosis, while maintaining adequate sensitivity and specificity.
The 2005 revised McDonald criteria include the following:
- At least two attacks with objective clinical evidence of at least two lesions
- At least two attacks with objective clinical evidence of one lesion plus dissemination in space shown on MRI, or two or more MRI lesions consistent with MS plus positive CSF finding or second clinical attack
- One attack with objective clinical evidence of at least two lesions plus dissemination in time on MRI or second clinical attack
- One attack with objective clinical evidence of one lesion, plus dissemination in space shown on MRI, or two or more MRI lesions consistent with MS plus positive CSF finding and dissemination in time shown on MRI or second clinical attack
- Insidious neurologic progression suggestive of MS plus one year of disease progression determined retrospectively or prospectively and two of the following: positive brain MRI result (nine T2 lesions or at least four T2 lesions with positive Visual Evoked Potential), positive spinal cord MRI result with two focal T2 lesions, and positive CSF findings.
The availability of disease-modifying drugs has made placebo-controlled clinical trials ethically questionable which in turn makes the use of historical controls attractive (comparing the results to previous trials and observations). However, MS diagnostic criteria have seen dramatic changes over the last twenty years with the introduction of MRI in the diagnostic work up (see Poser vs. McDonald criteria above).
As mentioned in the abstract at the beginning of this post, using different criteria for classifying patients into various stages of a disease can modify the stage-specific prognosis, even though the overall disease course remains unchanged. Known as the 'Will Rogers phenomenon' this precludes the use of historical controls for treatment trials. The researchers assessed whether the Will Rogers phenomenon may affect multiple sclerosis (MS) prognosis when different diagnostic criteria are applied to the same patient population.
In 1995-2001, 322 consecutive patients with a clinically isolated syndrome (CIS) suggestive of MS were studied. They each underwent brain MRI within 3 months of clinical onset, at 12 months, and 5 years later. Number and location of lesions on baseline MRI and the development of new T2 lesions at follow up were evaluated.
After 1 year, each patient was classified as CIS or evolved to MS according to two different diagnostic criteria (Poser and McDonald). The outcome for prognosis was the time to reach an Expanded Disability Status Scale (EDSS) score of 3.0, compared in CIS and MS according to each set of criteria. Concordant and discordant diagnoses between the Poser and McDonald criteria were also studied.
309 patients were followed for a median period of 84 months (7 years). After 1 year, 16% of patients had developed MS according to Poser and 44% according to McDonald criteria. The probability to reach EDSS score 3.0 at median follow-up was 11% in CIS patients according to Poser and 7% according to McDonald criteria; it was 46% in MS patients according to Poser and 27% according to McDonald criteria.
[Statistics presented at ECTRIMS vary slightly from those above. Probability to reach EDSS score of 3.0 at year 8 was 15% in CIS patients according to Poser and 9% according to McDonald criteria; it was 52% in MS patients according to Poser and 34% according to McDonald criteria.]
An improved prognosis was seen in both groups (CIS and MS) for patients classified according to the McDonald criteria as compared to the Poser criteria. The group with discordant diagnosis had worse prognosis than patients classified as CIS by both criteria (p=0.014), but better prognosis than patients classified as MS by both criteria (p=0.01).
These observations support the hypothesis that “stage migration” (caused by different diagnostic criteria) may generate spurious improvements in the medium-term prognosis of MS and call for caution in using historical control groups in MS clinical trials.
While I'm still digesting all the possible implications of this information, it seems that 16-18% of the 309 patients reached EDSS score of 3.0 in 7 years from the first neurological event.
So many MSers tell a similar story in that they were diagnosed at one point in time, but that their neurologists think that they've had MS years before then. If your prognosis is determined by how quickly you accumulate disability since diagnosis, then it does matter when and how you are diagnosed.
If we are being diagnosed earlier in the normal course of the disease, then our prognosis will certainly look before. It just feeds into the ambiguous questions of - Where would my MS be if I had did nothing? How do I know if my treatment choices are really working? How long have I really had this disease?
On a personal note, I often struggle with that last question. Is it since 2005 when I was diagnosed? Is it since 2000 when I went blind (but did not go beyond a brain MRI and vision fields testing) to determine optic neuritis? Is it possibly since 1993 (1994) when I first when through the MRI tube to rule out brain tumor?
I guess the state of my MS disability looks somewhat different if I could say I've had MS 5 years vs. 10 years vs. 16 years. But regardless, I am where I am right now no matter what. And I have to admit that I've been feeling better since the Rituxan infusions in November-December.