Sunday, May 31, 2009

Welcome to the MS Blogging Community

New folks discovered around the MS neighborhood. Welcome to the shortbus.

"My name is Krista. On April 14, 2009, I was diagnosed with Multiple Sclerosis. Within a few hours of the diagnosis, I got my first tattoo--a Dwennimmen. This is my forum to toss out thoughts and information about these and other elements of my life as a 34 year old, active, tattooed, diagnosed dame."

Suejan describes herself: "I feel old now, am retired, used to be PR journalist. Have autistic son 36 & identical girl twins 33. Interests: art, gardening, antiques."

Jeff describes himself: "I was diagnosed with Multiple Sclerosis (MS) officially on January 22nd, 2009. This is what I live with on a daily basis."

Luis describes himself: "I am 67 years old, progressive MS since 1989, dx'd 1976, use wheelchair in the apt. and outside. Considering giving up driving."
"How miserable can Life be!" I read the other day, in my case the adjective "miserable" is not the appropriate one, I have a wife worth her weight in gold, she bend over backwards for me, I have two sons and a daughter that always call or come over just to talk with me for a little while, I have read horror stories of MSers just abandoned by their family, wives that run away from their partners just because the sexual life is non-existant! and is when I read about those terrible cases that I say proudly and as loud as possible: "I HAVE A BAD DAY BUT I ALSO HAVE A WONDERFUL FAMILY!"

Laura describes herself: "Mom of 3 plus 2 amazing grandchildren. Live a double life. One in Canada, the other in the US. Just your basic ruckus causing mom."
My son was just informed that he is laid off from his job at a lovely (not) company in Calgary. We believe it is due to the time he had to take off due to his last two MS relapses. He was sick with the flu on Monday and when he returned to work today, they gave him the news. Sure wish I could prove this one but companies are so good at covering the behinds. The stress was just beginning to lift as he had moved with his friends into his own place and life was beginning anew for him. I know they say things happen for a reason but this one is hard to find the reason for. He finally found a job he really enjoyed doing and was looking forward to a future with them. I guess we have to believe that when one door closes, another opens. It's just all so frustrating for a kid who is trying to get well. This mom wishes he's just move home and take a long rest from it all before trying to begin again but I have to let the birdie fly...I have to let the birdie fly...can you tell I'm trying to convince myself?

Thursday, May 28, 2009

Primary Sexual Dysfunction in MEN with MS

The most common problems experienced by men are difficulty or inability to get or hold an erection, decreased genital sensation, rapid ejaculation, and difficulty or inability to ejaculate. Difficulty acquiring or maintaining satisfactory erections seems to be the most common male complaint in MS, with frequencies ranging from 25 percent to 75 percent of those surveyed.

Erectile Problems

In some cases it may be hard to tell what is causing the erectile difficulties. Demyelination may directly affect erectile function. Medications may also be factors. Stress and anxiety produced by living with MS may contribute to or even be the primary cause of erectile dysfunction. Understanding the mechanics may help you and your partner.

In the presence of sexual stimulation, nerves in the spongy tissue of the penis release the chemical nitric oxide, stimulation the production of something called cyclic GMP which relaxes the smooth muscle in the penis, compressing the veins. When this happens, blood flows in but cannot get back out, and an erection occurs. Drugs used to increase GMP include sildenafil (Viagra®), vardenafil (Levitra®), and tadalafil (Cialis®) All three drugs work by allowing an erection to occur when a man is adequately stimulated; they do not produce an erection in the absence of stimulation.

Additional Options Available

The vacuum tube and band device can be an effective alternative to medications. It consists of a plastic tube with a pump and band for the base of the penis. The tube fits over the penis. The hand pump produces vacuum pressure, and the band constricts the veins. This makes the penis fill up with blood, producing an erection. The tube is then removed. Because of its effectiveness and availability, the vacuum tube and band are widely used by men with MS.

Rest this post in its entirety:

Sexual Dysfunction in Men Living with Multiple Sclerosis

Wednesday, May 27, 2009

Multiple Sclerosis has 1000 Faces

In a virtual hands around the globe, today is World MS Day as national MS societies led by the Multiple Sclerosis International Federation join together to spread awareness, promote research, and improve the quality of life for those living with MS.

Together every individual, group and organisation in the world can fight to improve the quality of life of all people with MS and the many more people affected by it. The global MS movement:
  • Undertakes research into treatment for, and an end to, MS
  • Develops the capacity of MS societies to support people with MS
  • Communicates information about MS
  • Advocates and campaigns for the rights of people with MS

Join the Global Movement. End MS!!

Tuesday, May 26, 2009

My RA and MS Diagnoses: The Autoimmune Diseases Jackpot

It is hard to know if symptoms of multiple sclerosis or symptoms of rheumatoid arthritis delayed the diagnosis of either disease in my case. My journey reached a diagnosis of multiple sclerosis in October 2005 with the diagnosis of rheumatoid arthritis in April 2007 -- 18 months later.

But it was in 1993 that I first experienced symptoms now believed to be related to multiple sclerosis. These symptoms included impaired vision, headaches, and depression in the months following a minor whiplash event. The doctors at the student clinic in the School of Optometry at Indiana University suggested that I have an MRI. Basically, they wanted to make sure I didn't have a brain tumor. I did not have a brain tumor. Any inflammation of the optic nerve that might have been present had resolved by the time I had the MRI. Eventually my vision problems and headache went back to normal leaving me with a mysterious, unexplained event.

In 1995, I tripped on the way to a concert by the Evansville Philharmonic. I don't know what I tripped on, but I trashed my french horn, sprained my wrists, and broke my left arm just above the elbow (hairline fracture). After this event, I developed an achiness in my left arm and wrist that I simply became accustomed to over the years.

For the next five years, I had several random and vague complaints which centered on my hands, which I wrote about in "Carpal Tunnel Syndrome or Not?" Being seronegative certainly delayed my RA diagnosis, but likely reminding the doctor that “I had optic neuritis in 2000 and my mother has lupus” probably didn’t help either. During these years, I also experienced fatigue, weakness, and walking problems. But I still didn't have a diagnosis of either disease.

Read this post in its entirety:

Which came first, a diagnosis of rheumatoid arthritis (RA) or multiple sclerosis (MS)?

Thursday, May 21, 2009

Carnival of MS Bloggers #36

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

"Without Darkness There is No Light"

Photos by Nina

The Shadow Self
by Nadja Yse Stringer

I long to be only as I am--
To let the voice of doubt in my mind

I swore I would give up this addiction--
My desire to find chaos where there is none
My willingness to see obstacles where none exist.

Shadow self,
Anarchist in my mind.

I am not you
I am not my fear
I am not just my shadow.

But you are real
Not to be ignored or denied
You will have your say--

There's darkness
But there is also creativity--
Layers of my being only revealed
In the mirages with which you fill my mind.

I am not you
But you are me
Something deep in my soul that stirs me

I never was silence
I never was tranquility
That too is not my nature.

I am bursting
But I cannot create without catharsis--
You are my catharsis.

I long to shrug you off
But you too have a place in my being
I cannot ignore your pull
You are a parasite
but one I need for growth.

So I battle you,
I resist,
I let you fill my mind with whispers of hate--
For my weaknesses

But you will not be denied--
Alone I shine briefly
But then go out--

Struggle as I may
I create nothing,
Grow nowhere without your shoves.

Without darkness
There is no light
Without either,
All things are cast in shadow

I can fight you
Or I can use use you--

After 19 years of allowing medical types (that means doctors, therapists, and such) to direct my MS therapies I have decided to do what I have had to do all my life (those who want to argue this point---BRING IT): GO IT ON MY OWN.

I know how I got to this point in my non-walking/standing life. I alone watched it unravel before my ON (that's optic neuritis for you non-MS readers) eyes. I know the moments where changes began, I know what kept me down. My big idea is this----(Wait. Understand I am full of big ideas, some say full of something else, but constipation has never been a problem for me, though I never used a public toilet in over 25 years, unless you count that hole in the ground at some stupid park my mom just HAD to looking back I don't know how I did it, but I also rarely drank water...I must have been dehydrated all my childhood. Seriously, I'm surprised I made it this far with only a touch of cancer and slap of MS!) I will work in reverse to regain what I lost. Not much different from using psychology to help someone confront their demons or find their lost keys.

First up: rebuild muscle in left leg. Start standing on it every morning a little longer each time. Get an exercise bike I can use from my power chair. Shave my legs. Buy some shorts. I have exercises for all the muscles. I have cuff crutches, TWO quad canes, a gait belt, a rollator. Must eat protein, up vit D and calcium. Buy the "Rocky" theme song for my Ipod.

Then I will need people. Think Diane, think....where to find people to help me walk, hold onto my core/back...people people...

Today I walked. I WALKED. Just 6 steps, but it brought the house down! There were tears of joy (partner) laughter and wows (friend) and "Yes I Can." (Moi)

Friend wrapped a gait belt around my upper leg (the dead zone leg) and as I stepped out I would shift my weight right to left telling her when to give a yank. We all agreed I could have gone farther, but we were all a bit overcome and will regroup tomorrow.

This all came after we fixed the printer, I did my mini exercise bike, my arm weights, dealt with my dental insurance saying I didn't exist, snacked on leftover salmon and fresh brocolli and sat in a moment of sun on the balcony. (Next week is supposed to be fantastic!)

Did I mention I WALKED??!!

This week was hard because I have an aide who is young and not very skilled. I manage my day so as to be not in need of her; she leaves early. So, I can't try the walking on Friday or Sat., at least until I get my helpers aboard. My laptop typing wears me out, so I must avoid it on those days.

Today a friend came over and after I took a spin around the new digs, we did exercises---the mini-bike, weight bearing (standing without holding on to anything), arm weights, ROMs (Range of Motion---she moves my legs through natural use movements), yoga (In my lift chair, lying flat I do positions.) and then she strapped my left leg and we took off---four strides out and back. Using the walker does strain my arms though and I had to schedule my Dr, appt. for late next week. He will just suggest PT or sleeping in my bed.

Did I mention I WALKED FOUR steps out and back? It always feels so good, so right. I must make my brain build a new pathway. If only I had Montel's people and money...LOL. No, this is MY life, MY MS, MY path.

Tomorrow is visit to new dentist in my new neighborhood. My visit to my neurologist last Friday was ridiculous; if I hadn't gone with a friend I would have thought it was all in my head. Oh well, another post.

Did I mention I WALKED??

This concludes the 36th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 4, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 2, 2009.

Thank you.
Comments for this post.

Tuesday, May 19, 2009

Understanding How MS Can Affect Sexual Function

Part One in a 6-part Series

SEXUAL DYSFUNCTION is a common and very distressing symptom that affects up to 70 percent of men and women living with multiple sclerosis. MS can affect sexuality, sexual functions, and expressions of intimacy both directly (referred to as primary sexual effects) and indirectly (referred to as secondary and tertiary sexual effects). The prevalence of sexual dysfunction is higher in MS than in other chronic diseases, and almost five times higher than in the general population. In this series of posts, we will be exploring sexual dysfunction in men and women, sexuality, intimacy, coping skills, and sex tips and toys.

Primary Sexual Effects

The central nervous system (CNS) makes sexual arousal possible; the brain, sexual organs, and other parts of the body send messages to each other along nerves that run through the spinal cord. MS-related damage to these nerve fibers can directly impair sexual feelings or sexual responses in the same way that damage in the CNS can affect a person’s ability to walk or see. And, just as with other aspects of MS, sexual problems can arise at any time, without any clear cause.

The primary sexual effects, which occur as a direct result of demyelination in the spinal cord or brain, include:
§ Decreased or absent sex drive.
§ Altered genital sensations such as numbness, pain, or hypersensitivity.
§ Decreased or absent genital sensations.
§ Decreased vaginal muscle tone.
§ Difficulty or inability to get an erection.
§ Decreased vaginal lubrication and clitoral engorgement.
§ Difficulty with or inability to ejaculate.
§ Decreased frequency and/or intensity of orgasms.

Read this post in its entirety:

Sexual Dysfunction and Multiple Sclerosis

Sunday, May 17, 2009

Let's Talk About Sex

I'm in the process of writing a series of articles surrounding the topic of Sex and MS. It's easy to get the basics of various types of sexual dysfunction, but I'd like your help in collecting ideas for how to get past those problems.

What I'm looking for are suggestions or comments on sexuality and intimacy, relationship matters (and if you've participated in the NMSS program by this same name please contribute to the disucssion), and sex tips, toys, and tools which are helpful.

So I'm opening the floor to you. What do you have to say? Let's talk some sex.

Thursday, May 14, 2009

Attention MS and RA Patients, NIH would like your input

If you have a chronic illness, you should go to and complete the survey there. I read about this on Duncan Cross' blog. He did it in about ten minutes, but it took me much longer!! Seriously: do it now.

The survey is part of an NIH-funded research study, and they need all the responses they can get. This is how Jennifer Jaff (one of the people working on the project) explains it:

Advocacy for Patients with Chronic Illness, Inc. and the University of Michigan Center for Managing Chronic Disease have been awarded a grant by the National Institutes of Health (NIH) to study the obstacles facing the chronically ill and caregivers, interventions that do and do not work to surmount those obstacles, and ways in which the work done by the NIH, including research and clinical trials, may be helpful to patients with chronic illnesses. With the help of twelve patients and caregivers, we have drafted a survey which is available online at .

If you have a chronic illness such as Crohn’s disease, ulcerative colitis, rheumatoid arthritis, fibromyalgia, multiple sclerosis, immune deficiency, or other chronic illness or are a caregiver of someone with a chronic illness, are at least 18 years old, and would like to take the survey, please do so. If, for any reason, you are unable to take the survey online, or you would prefer to be interviewed by telephone, or if you have any questions at all about the research, please contact Jennifer Jaff at (860) 674-1370. She will answer any questions you may have, provide more details about the study and arrange for an interviewer to call you to schedule the telephone interview at a time convenient to you. Any services you or the person you care for may receive from Advocacy for Patients will not be affected by your participation or decision to not participate.

Thank you.

Wednesday, May 13, 2009

Do you enjoy music? Do you download music?

Have you done a good deed today? Here's one: Take a minute to fill out this survey for my friend Mark Katz, a music professor at UNC. Your results will be included in the second edition of his book "Capturing Sound: How Technology Has Changed Music", a study of the influence of sound recording on modern musical life.

Music Downloading Survey
The purpose of this survey is to gather information about the practices and attitudes of those who use the Internet to download and share sound files of music (MP3s, etc.). This research is for the second ...

If you have used iTunes, Amazon, BitTorrent, or other online sources to download music, please fill out this brief survey. Thanks.

For anybody who is curious about the questions asked, here they are:
Questions 1-6 are demographic in nature.
7. What best describes the way you *currently* download music from the Internet?
8. Has your use of paid vs. unpaid services changed significantly since you started downloading music? Please explain your answer.
9. Please list the services you have used to download music in order of most to least frequent use.
10. Approximately how many songs have you downloaded in total? Is there anything you'd like to explain about your answer?
11. What kind(s) of music do you download? Please mention specific genres or styles.
12. Do you download music to explore unfamiliar artists or genres? If so, can you give some examples?
13. Has downloading/file-sharing affected your taste in music? Please explain.
14. Do you share your sound files with others (i.e., through e-mail, burning to CD, etc.)? Is there anything you'd like to explain about your answer?
15. How do you feel about downloading music without paying for it? Please explain your answer.
16. How do you feel about the legal actions (cease and desist letters, lawsuits, etc.) that the recording industry has pursued in order to discourage illegal downloading and file-sharing? Other/Comments
17. Do you buy CDs? If yes, why do you sometimes choose to buy CDs rather than download the same music on the Internet?
18. Do you go to concerts? If yes, does your downloading/file-sharing affect your concert-going habits? Please explain.
19. Do you have other thoughts about file-sharing/downloading that you'd like to share?

Tuesday, May 12, 2009

Multiple Sclerosis Relapse and Solumedrol

What to Do If You Have a Relapse
The best thing you can do to manage your MS is to stay attuned to your body and become familiar with the pattern of your symptoms. Call your MS clinician if you have new symptoms or an old symptom comes back and gets more severe over time--for instance, if you have tingling in your arm in the morning and by the next day one whole side of your body is tingling.

How are MS Relapses Treated?
The good news is that not all exacerbations require treatment. Mild sensory changes (numbness, pins-and-needle sensations) or bursts of fatigue that don’t significantly impact a person’s activities can generally be left to get better on their own. If they don’t, or they expand into other symptoms, the relapse may need to be treated with a course of intravenous steroids.

For severe exacerbations (involving loss of vision, severe weakness or poor balance, for example), which interfere with a person’s mobility, safety, or overall ability to function, most neurologists recommend a short course of high-dose corticosteroids to reduce the inflammation and bring the relapse to an end more quickly. The most common treatment regimen is a 3-5 day course of intravenous Solu-Medrol® (methylprednisolone). High-dose oral Deltasone® (prednisone) may also be used.

Read this post in its entirety:

How to Manage Multiple Sclerosis Relapse: The Use of Solumedrol

Monday, May 11, 2009

Following Blogs

Just a quick note to say that I'm still recovering from the weekend's activities. The recital went splendidly and I enjoyed viewing Star Trek at the IMAX theatre on Saturday. Pretty cool stuff.

Also I wanted to let everybody know that I've made a decision to make a change in my method of "following blogs." (No, Jen, this has nothing to do with your recent post.) I've been thinking about this for a while.

It is my suspicion that some folks "follow" blogs just to see their photo in the little box of followers. Of course, it's nice to see who follows a particular blog and I've discovered new bloggers by looking at this feature. But, I've decided to change to all anonymous following.

This will help to clean up my profile a bit. So if my little photo disappears from your sidebar, please know that I'm still reading. This is just a personal decision I've made.

Be well everybody.

Sunday, May 10, 2009

Mother's and Music

Happy Mother's Day. For each of my music students, today is the day of the Big Annual Spring Recital. The day of fingers flying and lips a-buzzing. The day of exhausting listening, encouraging, organizing, and general "being on." It's a day which I look forward to, then wish would pass as quickly as possible.

Today I will be accompanying each of my horn students in their solo pieces for which everyone earned Superior ratings at Solo Festival. Great Job Guys!! And I will close the final recital with a performance of Chopin's Nocturne in e minor, Op.Post. Afterwards Rob and I with each of our mother's will have a pleasant dinner at a local Thai restaurant. Then, I'll come home and crash.

So I'll see you all on the other side of today. Bye for now.

Saturday, May 9, 2009

An Uncommon MRI

Wonder if Lazy Julie suffered this side-effect during her recent MRI trip? Julie found a website for all of us which has examples of the sounds of the MRI. Ah, brings back memories.

Cartoon from Closer to Home by John McPherson

(h/t to Doc at Mind, Body, Soul)

Thursday, May 7, 2009

RA Diagnosis and Boutonniere Finger

My first appointment with the rheumatologist was exactly two years ago. I brought to the appointment: x-rays of the swollen (and immobile) finger, a note detailing my symptoms and attempted treatments, and a history of blood work. The rheumatologist used a nifty ultrasound machine to detect inflammation around the joints and possible erosion of the bones in the joints due to arthritis. The evidence seen on ultrasound combined with the examination, my history of symptoms and treatments, and the current complaints earned me a diagnosis of Rheumatoid Arthritis.

I was thankful to finally get an accurate diagnosis and one for which treatments are available. “Let’s kick this thing in the butt,” I said. First decision to be made: which drug therapy(s) to use. The anti-tumor necrosis factor (anti-TNF) biologics are powerful drugs (Enbrel, Humira, Remicade) but cannot be used by persons who have multiple sclerosis or other demyelinating disease as I do.

I started with Methotrexate, added Sulfasalazine, and finally Plaquenil. However, plaquenil caused an odd side-effect in me: overwhelming fatigue and lassitude. Basically, I couldn’t stay awake during the day, so I quit that drug within the first week, leaving me with a double combination therapy to battle the rheumatoid arthritis.

Thankfully, I responded well to the drugs. However, when the swelling finally went down, I was left with two crooked fingers which no longer could be pointed directly straight. I had developed a Boutonniere Finger deformity.

Next stop on my journey was to the Occupational Therapist at the local hospital outpatient rehabilitation center. The prescription was for the therapist, who specializes in hands, to teach me proper joint protection techniques and to be evaluated for intervention and treatment of the mild Boutonniere deformity.

Read this post in its entirety:

Carpal Tunnel Syndrome or Not? Part Two

Carnival of MS Bloggers #35 - Rollercoasters and Walks

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

"Rollercoasters, Steroids, and Walks"

MS has taken some things away from me, or the ability to do some things. A little over two years ago, we sold our two-story home and bought a ranch that is on 1.25 acres. A few months after that, we bought a riding lawnmower. I mow the yard.

That lawnmower has given me so much pleasure! I have a responsibility to do that I absolutely love doing. When I'm on the mower, I have a sense of pride and I have a whole lot of fun. Once I mow the front and sides, then the fenced-in part in back (Montana's yard), I get to do the "back 40". This is a huge part with slopes. Have you ever mowed going down a slope? Sometimes I pretend I'm on a rollercoaster, let it rip, and yell all the way down! It's given me back a little bit of myself that had I lost.

Read the rest of Maryann's post here. Then see how she is Cooking Up A Storm.
I fixed these two recipes yesterday and today. My energy level is low, so I can't do too much at once but Montana needed more cookies for dessert, and I needed to make him more grains. I found buckwheat at the food co-op, plus bought two pounds of millett because that's the only place I can find it. Buckwheat (or kasha to us Jews) is cooked like millett except for one added ingredient--egg white.

How to Cook Buckwheat

Add 1 cup of buckwheat groats to a heated skillet, and add to it a beaten egg white. The egg separates the kernels as they cook, which prevents the groats from sticking together. Stir the buckwheat/kasha and egg mixture until each grain is separate and dry. Then, add 2 cups of boiling liquid, either stock or water (I added water), and a dash of salt. Simmer the mixture for 30 minutes or until the liquid is absorbed. I let this cool, then divided it into separate portions in zip-lock bags.

Crunchy Oatmeal Dog Treats
  • 3 cups oatmeal, uncooked
  • 1 1/2 cups whole wheat flour
  • 1 cup cold water
  • 3 Tbsp fresh parsley, chopped (natural breath freshener)
  • 2 egg yolks
  • 1 tsp baking soda
Mix all ingredients together. This mixture is a little sticky, so I floured my hands to work with it. You can make these big or small. Roll into balls and place on a greased cookie sheet. Bake 14-15 minutes in a 350 degree oven. Cool on paper towels. Can be stored in fridge for up to 2 months.
Ivy documented her experience with Solumedrol and a Prednisone Taper. Her series is a must-read and here is the beginning....

Tomorrow is Day One on Solu-Medrol. On Friday the company called to set everything up. They asked if they could drop off the supplies later that day, so I said sure. A gentleman arrived carrying an IV Pole, a white bag full of stuff, and a large silver envelope containing the medication. I put the Solu-Medrol in the fridge and put the rest of the stuff where the girls couldn’t get to it.
Later that evening, I took a peak to see what was inside. Me and my curiosity! There was a crazy amount of stuff in there. It was all of the stuff I try not to see while in a hospital. I was not ready for that. In case you have to do IV steroids or are helping someone else who is, I took a picture of all of the stuff and thought I’d share it so that you’d know the kind of stuff that was coming:
In case you are wondering what on Earth all of this is, here’s the packing list:

3- 1000 MG Solu-Medrol/Minibags 116.00ML
4- 50MG Diphenhyd/0MG Epinephri 1ML (Just in case I’m allergic)
3- ADM. Set-Gravity w/dial-a-flo 1 EACH
20- Alcohol prep pads
1- AOB (Assignment of Benefits form)
1- bag, Infectous Waste
3- Catheter 24 GA Insyte Autogard
1- Estimated Insurance Form
3- Extension set 12″ Smartsite
4- Heparin Flush 100 Units/ML 5ML Prefilled
2- Infusion end caps
1- IV Pole
3- IV Start Kits
1- Manual (More paperwork)
3- PICC Shower Barrier
1- Sharps Container, 1.3 QT
8- Sodium Chloride Flush 5 ML, prefill
1- Start OC/Restart/Change Pt Info Pkt
2- Syringe 1CC TB 25g 5/8″ Safety Glide
2- Syringe 3CC 23GX 1″ Safety Glide
The nurse is coming tomorrow afternoon and I’m trying to stay calm, but it’s not easy. I’ve always hate IVs, not that anyone likes them, but I truly hate them more than the average person. Here’s one example. The best thing about Little Sister’s delivery going so quickly was that they didn’t have time to get in the IV. I clearly remember being told it was too late for the epidural, but the next words out of the nurse’s mouth was that it was too late for the IV, which was the best thing she could have said. When I first started writing I’m sure I mentioned that I hated needles. Well, needles are a thousand times better than IVs. IVs gross me out because they actually stay in my body. At least needles come right back out.
When the nurse called this evening to set up the visit time, I asked if she’d keep the IV in or do a new one each day. She said she prefers to leave it in. I’ve never had an IV in that long. The longest has been about 24 hours and that was the most I could tolerate. Not only does the needle gross me out, but my skin is so sensitive that I have a lot of trouble keeping on adhesive tape for that long. This is going to be interesting. I said I’d like to talk with her about it tomorrow, after I see how good she is at getting in the IV (I didn’t tell her that last part.) That’s the other thing, it’s rather hard to get an IV into me. During a previous surgery they had to try 3 different spots before they could put me under and I woke up with it in a 4th spot. I was so black and blue that I looked abused for weeks. I have faith that this woman will be better than whoever it was that did that to me. I’m also going to drink a ton of fluid tomorrow morning to make sure my veins are as cooperative as can be!
I’ve scanned a few things others have written about their experiences and tips. I think they may have just freaked me out more. I really don’t have any idea of what to expect. I think I’m about as educated as I’m going to be and I should probably stop searching for more info, just do my nightly shot, and call it a day.
Ivy also participated in her very first MS Walk, only two weeks after beginning the Solumedrol treatment. That's impressive!! I would have still been asleep on the couch.

Six months ago I never expected that I would have spent this past weekend doing the MS Walk in Ocean City, NJ. Six months ago I didn’t even know I had MS. A lot has changed in the past half year.
The first time I heard of MS is when someone asked me to donate to the MS Walk. I have cousins who do the walk every year and I’ve always donated to their efforts. Earlier this year I thought about doing a walk, but at the time my girls didn’t know I had MS. My girls know I’m a crew captain for the Breast Cancer 3-Day and that’s their only frame of reference for a “walk.” I do that in memory of a friend who lost her life at the age of 35 after battling breast cancer for only nine months. I still remember when she came to Big Sister’s birthday part in April 2007 and said she had just found a lump while nursing her baby.
From there it was a rapid slide from Stage 2 to Stage 4 breast cancer. She passed away just before Christmas 2007. I wasn’t sure how to tell my girls that Mommy has something people do walks for. I had a difficult time getting past that since they know I do the 3-Day so that other girls won’t lose their mommies like our friend’s family lost theirs. Even once we told the girls last month that I have MS, I still wasn’t sure how to tell them about the Walk. I didn’t want them making any connections between the 3-Day and the MS Walk. Yes, MS is important enough to walk for, but we’re not doing this because it can kill Mommy, because it won’t.
My last MRI is what motivated me to sign up for the MS Walk. I felt helpless knowing that there are a ton of lesions on my spine. That was quite a shock after thinking things were pretty good with only 3 spots on my brain. Other than staying on my daily drug and doing the steroid treatment, there wasn’t anything I could do about it. Then it occurred to me that there certainly is something I can do about it. I can walk. I can ask friends to walk with me. I can ask friends and family to support me. Together we can all do something about it. We can raise money and awareness to fight this for me and the thousands of others like me. It was empowering to take on this challenge.
Soon after I registered, four friends and someone I don’t even know (a friend of a friend) joined to walk with me. I was so elated! It all came together very quickly and in less than a month our team raised $1,000! As important as raising the money and doing the 4 mile walk (which was a bit of a challenge for me) was the time I got to spend with these amazing ladies. We’re very fortunate to have access to an old beach house, so we made an overnight of it. We had great food and great conversation. A get-away was just what I needed after Day Ten on Prednisone. Many of the ladies are walking the 3-Day this year, so it was a nice training walk for them. We even reminisced a bit about our friend who passed away. She would have appreciated that we had a few laughs when thinking about her.
While it’s hard to fundraise for two important efforts, I decided that I’m going to give it my all and hopefully continue to make a difference for both. From Mother’s Day through October, I’ll focus on the 3-Day. Now from October through May, I’ll focus on the MS Walk. Next year I hope to be able to do VIP Check-In. We all deserve a world free of breast cancer and free of MS. I hope I can do my part.

This concludes the 35th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 21, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, May 19, 2009.

Thank you.
Comments for this post.

Wednesday, May 6, 2009

Hot Temps and Jello Legs

Heat-Sensitivity and the Pseudoexacerbation

Many people with MS experience a temporary worsening of their symptoms when the weather is very hot or humid or they run a fever, sunbathe, get overheated from exercise, or take very hot showers or baths. For example, some people notice that their vision becomes blurred when they get overheated—a phenomenon known as Uhthoff's sign. These temporary changes can result from even a very slight elevation in core body temperature (one-quarter to one-half of a degree) because an elevated temperature further impairs the ability of a demyelinated nerve to conduct electrical impulses.

The ‘Hot Bath’ Test Used for Years to Diagnose MS

For many years, the “Hot Bath” test was used to diagnose MS. A person suspected of having MS was immersed in a hot tub of water, and the appearance of neurologic symptoms or their worsening was taken as evidence that the person had MS. So heat is a very effective method of bringing out or increasing the symptoms of multiple sclerosis.

Heat-Related Symptoms are Temporary

It is important to remember that heat generally produces only temporary worsening of symptoms and does not cause more disease activity (demyelination or damage to the nerves themselves). The symptoms are generally rapidly reversed when the source of increased temperature is removed. People with MS who are planning to move to a very warm climate should try to visit first; plans may have to be changed if the weather seriously worsens MS symptoms.

Read this post in its entirety:

Multiple Sclerosis Relapse or Pseudoexacerbation? Part Two

FDA Accepts Fampridine-SR NDA For Review


Acorda Therapeutics Announces FDA Acceptance of Fampridine-SR New Drug Application for Filing

• FDA Assigns Priority Review and PDUFA Date of October 22, 2009
• No Current Therapies Indicated to Improve Walking Ability in People with MS

HAWTHORNE, N.Y., May 6, 2009 – Acorda Therapeutics, Inc. (Nasdaq: ACOR) today announced that the U.S. Food and Drug Administration (FDA) has accepted the Fampridine-SR New Drug Application (NDA) for filing, assigning Priority Review and a Prescription Drug User Fee Act (PDUFA) date of October 22, 2009. The PDUFA date is the target date for the FDA to complete its review of the Fampridine-SR NDA.

“I am pleased that we were able to work quickly to address the comments from the FDA and resubmit our NDA approximately three weeks from having received the Refuse to File letter on our initial NDA submission, and that the FDA accepted the filing less than two weeks later,” said Ron Cohen, M.D., Acorda Therapeutics’ President and CEO. “We are also encouraged that the FDA has elected to assign Priority Review status to the Fampridine-SR NDA.”

About Fampridine-SR
Fampridine-SR is a sustained-release tablet formulation of the investigational drug fampridine (4-aminopyridine or 4-AP). In laboratory studies, fampridine has been found to improve impulse conduction in nerve fibers in which the insulating layer, called myelin, has been damaged. Fampridine-SR is being developed by Acorda Therapeutics and manufactured by Elan Corporation plc.

About Acorda Therapeutics
Acorda Therapeutics is a biotechnology company developing therapies for spinal cord injury, multiple sclerosis and related nervous system disorders. The Company's marketed products include Zanaflex Capsules® (tizanidine hydrochloride), a short-acting drug for the management of spasticity. The Company's pipeline includes a number of products in development for the treatment, regeneration and repair of the spinal cord and brain.

About Elan Drug Technologies
Elan Drug Technologies (EDT) is the world’s leading drug delivery company and is a business unit of Elan (NYSE:ELN). EDT developed Fampridine-SR, using one of their proprietary Oral Controlled Release Technologies, the MXDAS® (MatriX Drug Absorption System) Technology. Products developed by EDT aim to deliver clinically meaningful benefits to patients by using their extensive experience and proprietary delivery technologies in partnership with pharmaceutical companies. More information is available at

Tuesday, May 5, 2009

Myelin Quiz: Are You the Myelin Man!!

Justine from the Myelin Foundation @MRF_Justine asked me to take "The Myelin Quiz." So while I'm exploring that, I'll jump back here to take notes. Here goes.

The link she provided took me to "The Myelin Quiz" on Facebook (which is an application).

Are you a Myelin Man or just a Node of Ranvier? Test your knowledge about myelin.

  1. What does myelin surround
  2. What cells create myelin in the central nervous system (CNS)?
  3. What cells create myelin in the peripheral nervous system (PNS)?
  4. What is myelin composed of?
  5. What is the lipid percentage of myelin?
  6. Myelin is to Axon:
  7. What does myelin do?
  8. What body system can turn against and damage the myelin?
  9. What has recently been found to help with regenerating myelin?

After I hit the Submit Button, Facebook brought me to a screen prompting me to choose 4 friends to send The Myelin Quiz! Request to. I opted to skip this step for the moment and to click on the very small "continue to result" statement which is hiding below the "Processing your Quiz Result" near the top of the page.

Perhaps I will go back and request that ALL of my MS friends on Facebook take this quiz. Be forewarned. LOL. But first, let's see how I did. There were a few questions where I guessed since I didn't have a clue.

WhooHoo!! I am Myelin Man!!

You are Myelin Man!

You know everything there is to know about myelin. Seriously. You should get your Ph.D. (if you don’t already have one) and join a research lab at your nearest university immediately. Congratulations! Explanations for all answers:

Next you are given the opportunity to publish your results to your Facebook wall and friend's home pages. This is a step which can be skipped, but I thought "sure, why not. It will provide some exposure to the Myelin Foundation."

I also added the following commentary:
LOL. I combine calculated guesses with known answers and look where it got me. I feel so smart. ;p
Now I'm looking at the Quiz page where you can choose other quizzes to take or to "make your own Quiz." I chose to add my results to my Info Page instead.

One observation I have is that the.....

Explanations for all answers:

....does not contain a live link. I don't know if this is possible to change, but it would be useful to encourage more people to visit the Myelin Foundation's website.

Looking through the answers and explanations, I see that I missed two questions. did I become "Myelin Man" if I guessed incorrectly. Puzzling.

I might go around not knowing that "Layers of glial cell membranes" is the substance of which myelin is comprised. Now, that would be embarrassing during normal dinner conversation.

From the same landing page on the MRF's website you are offered the opportunity to:

Register for our e-Newsletter

Learn more and keep up-to-date on the progress of research on myelin repair, the next REAL hope for treating Multiple Sclerosis.

Tell Ten Friends and Family

Take a moment to tell ten friends and family in your personal and professional networks about the Myelin Repair Foundation and how myelin research is crucial to curing MS. Encourage them to register at our web site to learn more about our work and share what they learn with others.

Join Our Facebook Causes Campaign

Show your support on the social networking site, Facebook. You’ll be taken to the Facebook website where you can either log in to your existing Facebook account or create a new account in order to join our cause. Our Myelin Repair Foundation Causes page allows you track your impact in recruiting other members and in raising money for myelin repair research.

Donate $10 Right Now

Show your support for myelin repair research by making a donation.


Overall it was a fun experience and one which I believe will help to spread awareness of Myelin Repair Foundation and the issues of research needed for demyelinating diseases. Thank you Justine.

Monday, May 4, 2009

I like a good mystery

On Friday, I introduced some new-to-me MS blogs, the first of which is coming from Joyce Nelson, President & CEO of the National Multiple Sclerosis Society.

Upon reading that post steve said:
"Did you notice that there are actually three team members named "Joyce" on the NMSS blog? Sounds like someone's being paid to be Joyce Nelson's internet presence." on May 2, 2009 1:03 PM
Interesting observation. So I sent Joyce a direct message on Twitter:
LisaEmrich (DM) Glad you had a great Walk event. ? abt ur blog. There are 4 Joyces listed as authors. See comment here respond? 1:56 PM May 2nd
I had been reading Joyce Nelson's tweets leading up to the MS Walk in Colorado which was discussed on her blog in Please Don't Snow on May 1st at 6:16pm. Now we all know that the time stamp of a post is when you began writing that post, or the date/time you choose to be shown so this is on slightly relevant.
joycenelson1 Getting ready for the Colorado walk tomorrow. Hope the rain will wait until afternoon for once. Doesn't matter, great event, great cause. 6:07 PM May 1st

joycenelson1 Just finished another great walk event. Music, hope and people united for a world free of MS. Babiesn puppies, media stars what a movement! 12:54 PM May 2nd
My response to Steve's comment above was:
Steve, I wondered the same thing. However, I've also witnessed some clumsy Twitter presence where I suspect she started an acct with one email, then probably decided to create or use a different one which would be separate from personal contacts.

I suspect that she is NOT the admin on the blog but has been added as an additional "author." Maybe she was added thru her many email addys. Or, maybe, there really are a number of "joyces" who contribute.

I think it's probably just some inexperience and clumsiness showing through. It's an interesting endeavor either way. on May 2, 2009 1:51 PM

So on May 3, 2009, I receive two visits to the blog from an unknown visitor.
First visit to blog was at 1:22:31 pm - 1:22:48 pm and came from Twitter
- 17 seconds, 1 page view, outclick to National MS Society Blog
Immediately afterwards I received the following message:
joycenelson1 (DM) Not sure why 4 Joyces show- I often feel like I'm in 4 places at once though. Thanks for passing along my blog to your friends.
1:28PM May 3rd
Second visit to blog was at 1:58:31 pm - 2:16:18 pm, direct traffic
- 17 minutes, 47 seconds, 2 page views, outclick to The Onion
I read Joyce's direct message upon returning home after seeing a movie. I'll have to tell you all about that another time.
LisaEmrich (DM) LOL. 4 Joyce's. Sometimes I wish that I were 3-4 Lisa's to get everything done. Thanks for visiting the blog. Love to see you more.
~ 5:30PM May 3rd
And finally, today another visit to the blog.
May 4, 2009, blog visit from National MS Society computer in Denver
10:13:27 am - 10:39:19 am, direct traffic
- 25 minutes, 52 seconds, 2 page views, outclick to "Post a Comment"
- exit page was comment page (reader left no comment)
Now I was looking for Joyce's profile to see who her blog Team Members are on the NMSS Blog. I wondered if she (or whomever) would have cleaned up the multiple profiles which I had tried to presume were a mistake from her various email addys.

Where previously (on May 3) there had been Joyce, plus three other Joyce's, plus two other members (who I didn't think to make note of, darn), there is now only Joyce, plus two other Joyce's. See her profile here.

The profiles of the other two Joyce's are set to private. It was interesting that one had been established in March 2009 and another in April 2009, in addition to the "main" one which is now visible.

How do I see this? maybe I'll leave that for the experts in Denver to figure out. They've cleaned it up somewhat but there's still more which could be done.

If you're still reading, then you might be curious to know how I even discovered that the NMSS CEO blog exists. In the Twitter world, everything is about following folks and being followed. I came across a new Twitter account designed as being the NMSS in New York, presumably from the main office.
mssociety Following the National MS Society CEO's blog about her new Challenge Walk journey - check it out and follow! 5:45 PM Apr 9th

mssociety Thanks to all who walk the Walk MS events! Anyone training for the Challenge Walk MS events? @joycenelson1 is NMSS Blog 6:11 PM Apr 27th
mssociety's first tweet was on March 6, 2009 and the first person they followed was Phil Keoghan, whose first tweet on his account was also on March 6.
PhilKeoghan Just arrived back from NYC after doing the MS event in Times Square. Left NY on 6am flight still early here & heading out for a 6 hr ride. 3:39 PM Mar 6th
There's no problem with this at all. It is obvious that the PhilKeoghan Twitter account was developed to track his bike ride across America which is supporting fundraising for the NMSS.

So why do I suspect that Joyce Nelson has two accounts on Twitter with one being a clumsy social media mistake? Well, again looking at who is following whom, I found a Joyce Nelson who is followed by only two people. The account has only one tweet (a silly one at that) and the two followers are also connected to MS people.

One of those followers is Annabelle:
Annabelle MY 15 seconds of fame - link works finally -
9:31 AM Mar 3rd
Annabelle's profile says: "wanderlust addict, social media geek, ball o' energy, huge smile, redhead, works for Hachette Filipacchi Media, plays broomball"

Following the link provided in her profile I found this:
"...Annie currently does digital marketing and interactive publicity for some of the top magazines in the US."
In conclusion, I can't answer the question Steve raised as to whether this is the "real" Joyce Nelson who is posting to her blog. There are freelancers called "ghost bloggers" who can do a wonderful job creating content and perhaps PR.

But I do find the above information very interesting.

May 4, 2009, additional visit from NMSS computer in Denver
6:32:13 pm - 6:33:40 pm, direct traffic to May 1 post
- 1 minute, 27 seconds, 2 page views, may or may not have read this post
May 5, 2009, Burrelles Luce
6:59:27 am - 6:59:27 am
- directly to this post

May 5, 2009, Hachette Filipacchi Magazines
8:46:24 am - 8:46:24 am
- directly to this post

May 5, 2009, another NMSS visit to the original post
11:07:06 pm - 1:07:18 pm
- 12 seconds, 2 page views (post/comments)

May 5, 2009, another NMSS visit to the original post
1:02:53 pm - 1:04:38 pm
- 1 minute, 45 seconds, 2 page views (post/comments)

May 5, 2009, another NMSS visit to the original post
5:41:43 pm - 5:42:17 pm
- 34 seconds, 2 page views (post/comments)

Friday, May 1, 2009

Please Welcome MS Bloggers I've Recently Discovered

During the past month, I've encountered many new-to-me MS bloggers. I'd like to introduce a few of them. Take special note of the first blog on the list.

Joyce Nelson, President & CEO of the National MS Society, has started a blog!!
Mike doesn't have profile available on his blog. So you'll just have to visit.
"I was trying to think of some super cool topic to talk about so that I don't just ramble, but I guess I will talk about how in life things are thrown at us, and you have to learn to roll with the punches. So obviously I never expected to get diagnosed with MS. I guess no one really assumes they have it until a doctor tells them. Some people I have met talk about how they had a inclination that they had MS before they were truly diagnosed, but I know for me, I was in utter and complete shock."
"A place to think, hash over, explain, and explore my days living with Secondary Progressive MS. Thoughts on faith, surviving, and where my life is now."
"I was diagnosed with MS April 14, 2006. After the birth of my daughter. I had a hard time walking, things on my right side often became numb and I began falling alot.... Since my initial diagnosis I have become stronger mentally, emotionally and physically. Through slightly modifying my activities I am leading the life I thought MS would rob me of."
"Oh! The joy of social network sites. The fun of facebook, twitter, et al for me is finding all those other people called Dave Carey...what do they do? well do they do it?....found a guy in Florida who combined our mutual name with a mutual career...what you don't expect is a mutual diagnosis...poor old Dave many musicians called Dave Carey could possibly have relapsing remitting multiple sclerosis? Well, two it seems. We should start a band - we could call it MS vs Dave Carey...In fact I have now resolved to trawl the world for other potential band members of MS vs Dave Carey."
"I'm a nurse, writer, painter, vaguely creative soul, former pet owner and optimist. I'm also a person with MS. There are a lot of us out there. Coping with Multiple Sclerosis is never easy - this is my cheery account of how MS has given me a wonderful gift....or alternatively, how MS has #%@^!%%!'d up my life."
"My name is Tara. I have been married for almost 16 years. We have 3 children. I was diagnosed with Multiple sclerosis a little over 2 years ago and what a whirlwind it has been. I think I went from a "Type A" personality to a "Type Z" personality. It's like life started over for me and I have to learn who the new me is while life continued for the rest of the world and they think I am the same old me."
"My name is Jason DaSilva - I live in the East Village in New York. I am 30-years old and have MS. Here is my daily life, research, and thoughts…"
"I have found the computer very beneficial to my mental well being and keeping me connected to the world. In my past life before MS I was an R.N. It has been quite an adjustment losing my career and that identity. I do not give medical advice. Believe me with my brain you don't want any from me. LOL."
"curious about everything & everyone....some call it 'nosey'...(the poor misguided souls!)I have a gorgeous 25-year old daughter,& oh since i was 29...and THAT part of my life REALLY maybe ALL of it's sucked for a LONG time, and I just don't wanna admit it..."
"I am a stay at home mom of 7. I was diagnosed with MS in 2004. I had the pain pump put in and life is getting much better. Just a wife, mom, daughter, sister, christian, and all around crazy lady. Hope you enjoy the ramblings of a madwoman."
"Preston Walker, a Forth Worth police sergeant, has taken his battle with multiple sclerosis to Costa Rica to begin experimental stem cell treatments. This is his journey."
"On the other side of 50, I live in the Pacific Northwest with my husband and our two nutty labs, Max and Molly. Politically, I'm proud to be a liberal, for though I am all for fiscal responsibility and accountibility, I also believe that a society is judged by how it treats its young, old and infirm. I'm currently learning to live creatively with my multiple sclerosis..."

the dirty truth.

It's been a while since I've had much to say. Been lost in my mind, or out of my mind I guess I could say. So much happens when you stop paying attention. I wish i had a video camera to record every second of every day. There is one thing I know right now.. which is that I am asked at least 5 times a day, how I am feeling. It doesn't bother me at all.. what bothers me most is how robotic my response has become. GREAT! FINE! BETTER! or a variation thereof.. I wonder sometimes if people really want to know the truth... the brutal cold truth... I wonder if I should tell... it feels sometimes as if I'm holding this great secret.. but honestly sometimes I'm not even sure how I'm feeling today. So here it is.. the truth, so far...

I wake up every day to a new day. The meaning of that is paramount to anything I've ever said before. Everyday is new. Today is different than yesterday, sometimes better, sometimes different, sometimes worse. The thing is, that when I open my eyes and stretch my arms, I'm cognizant of the way it feels... the way everything feels. I wiggle my toes.. and it's in that wiggling that I find my breath stops, and my heart beats... for a split second... I worry, and I feel.. how are my toes today? Can I feel the blanket against them? Are they moving? Does everything feel right? If everything checks out, I smile wide, give myself a high five and I return to breathing. Thats just the way it goes now. I look in the mirror every day and I look fine. Good even. I've lost a lot of weight, my skin is glowing, my hair has grown.. I'm getting healthy.. and I cant help but question myself.. I cant help but think.."you look fine, now act fine..".. the thing is underneath this skin and bones.. these little antibodies are hard at work... moving and buzzing and tearing me apart. I'm under attack.. and I can feel it happening. I don't feel right to say the least. When I walk.. I walk with a sway. Like Im drunk.. the room spins and I lose my balance.. and I cant remember things, easy things.. I try hard.. but they're just not there... I feel like Im not there.. like Im somewhere far away.. watching me. It's weird and hard to explain... but I don't feel sharp. and I'm tired. But not the usual tired... tired like... my speech is slurred b/c it's too much work to move my tongue... tired.. like I cant pick up my arm.. tired like I just turn off and shut down... battery dead... it's unlike anything I have ever felt before. So the thing is... that in a way, I wish my outside would look like my inside.. so at least I would have something physical to see... instead I have to sit here... staring at myself.. wondering why I cant just feel the way I look.... wondering why I feel like Im a million miles away... wondering what today is going to be like... it gets tough sometimes... but look, the thing is... the REAL thing is... right now... at this moment in time... I want to stop everything... see, all the drama and the bullshit and the things I've been so eager to grow up and away from... suddenly.. I want to freeze.... cause I don't know what's going to happen when I get older... and this is it... this is the stuff... right now. I want to roll around in it and savor it, and be thankful for it and most of all... MOST of all, I want to kiss everyone on their foreheads and tell them thank you... for showing me how to live.