Saturday, January 31, 2009
Check it out and you will find some familiar MS Blogger faces.
Friday, January 30, 2009
Multiple sclerosis is an expensive disease and many patients cannot afford the cost of treatment. An all too common experience for many MS patients.
With just a handful of patients a few years ago, the city today has around 200 people afflicted with MS, a chronic progressive disease of the central nervous system. Of these, only a few can afford treatment as it costs as much as Rs one lakh a month.
Rs-1 lakh = 100,000 Indian Rupees = approximately $2050 USD in today’s exchange
What else could one buy with Rs-1 lakh in India? Well...
Rest this post in its entirety:
News Headline: Human Chain to Raise Funds for MS Patients
Thursday, January 29, 2009
Forums and Message Boards for the Chronically Ill
Many readers are aware that I participate in various MS communities online and am somewhat skeptical of the quality of information and support which is often given. You may also be aware that I try to keep up on research related to multiple sclerosis and share some of that with readers.
As important it is to know 'how' to read the latest news or announcements of medical advancements and clinical trials, it is equally important to know how to find credible, reliable objective health information on the internet.
Something which we don't often think about is the quality of the online communities in which we choose to participate. Some are moderated and require that every post be approved by a human, but some have little to no moderation in place. Then there are the forums which are designed to collect and analyze patient data and behavior- see "what can happen when patients have access to one another's data."
This Carnival edition is meant to focus on the drawbacks and dangers of online forums for patients, not to highlight the benefits. We will need to feature the positives in a future collection of posts. First, the bullies.
The first open use cyber-bulletin board I remember using was way back when (hear my bones creaking here) . . . a Prodigy one that was accessible via a V.22 1200 bps modem. It had a simple menu with four items and you had to wait a day for any reply to be posted. It posted on a board for recovering alcoholics. And, here is the point, there were “trolls” and “bullies” then and there are “trolls” and “bullies” now. They just have more available means and mediums to flourish in.
Recently I have joined a few multiple sclerosis forums. I don’t post - I lurk. Why? I do not choose to hang myself out there and be annoyed by the trolls and bullies. I have learned a lot reading through the posts. Some forums are better moderated than others and I have to apply some common sense in distinguishing the facts from the B.S.
As for the forums I am not sure. It really is silly that I could allow some name, a moniker, upset me. Just remember you are never as anonymous as you hope online and words do hurt and there are alligators out there waiting to snap.
Cyberchondria has been on the mind of Nina lately.
There have been a few articles over the last couple weeks on how people are using the internet in relation to health issues. Microsoft published a research study. The results are interesting:
Our results show that Web search engines have the potential to escalate medical concerns. We show that escalation is influenced by the amount and distribution of medical content viewed by users, the presence of escalatory terminology in pages visited, and a user’s predisposition to escalate versus to seek more reasonable explanations for ailments. We also demonstrate the persistence of post-session anxiety following escalations and the effect that such anxieties can have on interrupting user’s activities across multiple sessions. Our findings underscore the potential costs and challenges of cyberchondria and suggest actionable design implications that hold opportunity for improving the search and navigation experience for people turning to the Web to interpret common symptoms.The research has been getting some media attention from NY Times and Guardian.
I agree and disagree with it. I don’t believe I escalate my symptoms. I educate myself on what I am experiencing, but not in an unhealthy way. I do think I am probably on the abnormal side of the fence though. From reading message boards on MS, I totally see this happening on a regular basis. Heck, Tom had an eye twitch and he thought he had brain cancer. It happens everywhere.
I know that doctors are recommending people not read about their condition on the internet. My doctor warned me and agreed with my opinion of MS message boards. There are a lot of people that get some tingly feet and think its MS. There is a long jump from tingly feet and MS. Maybe if I did escalate my symptoms I would have found out about the MS 3-4 years ago.
Which brings up an interesting point… would I have made different choices if I know about MS 4 years ago? I think I would have which scares me a bit.
Unfortunately, for those with MS [ed. some of us], the use of Internet discussion boards and chatrooms is usually not a good idea. One exception is looking at these boards and chatrooms as a way to possibly uncover the side effects of medications and treatments. For example, some of the drugs for MS cause hair loss, yet this is often not mentioned by doctors or pharmaceutical companies. Other than using the boards and chatrooms to find information on side effects, the boards and chatrooms are of limited value and can even lead to unwise and unhealthy decisions.
These problems occur in part because the online discussions are often frequented and even controlled by those who, because of psychological problems, are only imagining they have MS. Problems also occur when fake doctors find their way to these discussions, when sellers of quack cures are looking to make a quick buck, when hustlers prey on the natural sympathies most of us have, because group members sometimes encourage others to engage in unhealthy behavior and because the knowledge of group members is often dangerously limited.
The problem with control of discussions by individuals who do not have MS occurs because some individuals with psychological problems seek attention by faking MS symptoms. Such individuals have often been told by their doctors and neurologists that they do not have MS but these individuals will often persist in saying that they have “probable MS”.
Such individuals are not necessarily easy to identify in Internet discussion groups. Often they will come off a charming and supportive–at least until they are no longer the center of attention. The advice they give, however, is usually poor. Because they seek drama, they encourage others to have dramatic treatments. Why take an aspirin when a chemo drug may be thrown at a problem? These MS fakers do resort to bullying to get their way. Unfortunately, bullying is common in Internet discussions.
Other fakers in discussion groups include fake doctors. These individuals will call themselves doctors but they are not medical doctors and have limited knowledge of multiple sclerosis. Just because someone calls himself or herself a doctor, does not mean he or she is actually a medical doctor. The person may have a mail order PhD degree or some other degree actually requiring little training.
The fake doctors may be looking to make money off of desperate MS patients. After they have participated for a short period of time, they may offer a miracle cure for sale. Or they may encourage discussion participants to use their services.
Others also participate with an eye to quick profits. It is not uncommon to see hustlers trying to sell various miracle juices or supplements that supposedly cure MS. Or a more sophisticated ruse is to build a web site, sell advertising based on the web site and then use discussion groups to generate visits to the site. In this case, page views at the web site add up to additional advertising dollars.
Finally, there are those who try to get money out of others without offering anything other than a good sob story. While many with MS are impoverished, a wary attitude towards those requesting money from other members of discussion groups is appropriate. Some of those requesting money do not even have MS and should be out looking for a job.
Another group of problematic individuals active in Internet discussions are individuals with addictions–usually alcohol, drug or food related. These individuals are problematic because they will tell newcomers that factors such as drinking alcohol or diet do not matter even though doctors treating patients with MS know different. For example, doctors know it is difficult to cope with both obesity or malnutrition and MS. Diet matters.
Finally, there are individuals who are honest, loving and caring but who have such limited knowledge that their input is often not helpful. For example, one patient in a discussion group described symptoms that sounded like a heart attack but another person said these symptoms sound like MS and suggested that the person with the chest pain rest. The person with the chest pain should have been advised to see a doctor immediately.
It is important to remember that Internet discussions cannot replace face-to-face contact with others and real social support. If you feel lonely and socially isolated because of MS, call your MS society and ask for advice on how you can break out this loneliness. Or call a church and other group you trust and ask for help. Maybe a change in jobs or housing is needed so it is easier to maintain contacts with others and develop new friends.
Also, if you do feel lonely, promise yourself that you will do something to break out of isolation. Unfortunately, use of the Internet for more than a limited amount of time increases depression. This is the last thing you need when you are already coping with MS.
Remember, real face-to-face friends make life vibrant, fun and enjoyable. Don’t settle for some largely illusionary friends and lousy advice on the Internet. You deserve better than this.
Also remember that the articles you read on how great Internet discussions are have been carefully placed by businesses trying to make money. These businesses are not going to tell you about the many real problems involved in Internet-based discussions. These businesses are not going to tell you about the MS fakers, the hustlers, the alcoholics, the very obese, or all of the bad advice.
Again, remember, real face-to-face friends make life vibrant, fun and enjoyable. Don’t settle for some largely illusionary friends and lousy advice on the Internet. You deserve better than this.
Please remember to consult your doctors about how to stay as healthy as possible. Nothing here should be interpreted as medical advice. Instead, please use the information you find here in your discussions with your doctor.
Copyright 2008 Rebecca Hoover
This concludes the 28th edition of the Carnival.
Wednesday, January 28, 2009
By Alicia White, MD
If you’ve just read a health-related headline that’s caused you to spit out your morning coffee (“Coffee causes cancer” usually does the trick) it’s always best to follow the Blitz slogan: “Keep Calm and Carry On.”
On reading further you’ll often find the headline has left out something important, like “Injecting five rats with really highly concentrated coffee solution caused some changes in cells that might lead to tumors eventually. (Not to mention that the study was funded by The Association of Tea Marketing)
The most important rule to remember: “Don’t automatically believe the headline.” It is there to draw you into buying the paper and reading the story. Would you read an article called “Coffee pretty unlikely to cause cancer, but you never know?” Probably not.
Before spraying your newspaper with coffee in the future, you need to interrogate the article to see what it says about the research it is reporting on. Bazian (the company I work for) has interrogated hundreds of articles for "Behind The Headlines" on the NHS health news Web site, and we’ve developed the following questions to help you figure out which articles you’re going to believe, and which you’re not.
Does the article support its claims with scientific research?
If an article touts a treatment or a lifestyle factor that is supposed to prevent or cause a disease, but doesn’t give any information about the scientific research behind it, or refers to research that has yet to be published, then treat it with caution. A lot of caution, like balling the article up and throwing it in the (recycling) bin.
Is the article based on a conference abstract?
Another area for caution: news articles based on conference abstracts. Research presented at conferences is often at a preliminary stage and usually hasn’t been scrutinised by experts in the field. Also conference abstracts rarely provide full details about methods, making it difficult to judge how well the research was conducted. For these reasons, articles based on conference abstracts should be no cause for alarm. Don’t panic or rush off to your GP.
Was the research in humans?
Quite often the “miracle cure” in the headline turns out to have only been tested on cells in the laboratory or on animals. These stories are often accompanied by pictures of humans, creating the illusion that the “miracle cure” came from human studies. Studies in cells and animals are crucial first steps and should not be undervalued. However, many drugs that show promising results in cells in laboratories don’t work in animals, and many drugs that show promising results in animals don’t work in humans. If you read a headline about a drug or food “curing” rats, there is a chance it might cure humans in the future, but unfortunately a larger chance that it won’t. So no need to start eating large amounts of the “wonder food” featured in the article.
How many people did the research study include?
In general, the larger a study the more you can trust its results. Small studies may miss important differences because they lack statistical “power”, and small studies are more susceptible to finding things (including things that are wrong) purely by chance. You can visualise this by thinking about tossing a coin. We know that if we toss a coin the chance of getting a head is the same as that of getting a tail – 50/50. However, if we didn’t know this and we tossed a coin four times and got three heads and one tail, we might conclude that getting heads was more likely than tails. But this chance finding would be wrong. If we tossed the coin 500 times – gave the experiment more “power” – we’d be much more likely to get an even number of heads and tails, giving us a better idea of the true odds. When it comes to sample sizes, bigger is usually better. So when you see a study conducted in a handful of people, proceed with caution.
Did the study have a control group?
There are many different types of studies, and they are appropriate for answering different types of questions. If the question being asked is about whether a treatment or exposure has an effect or not, then the study needs to have a control group. A control group allows the researchers to compare what happens to people who have the treatment/exposure with what happens to people who don’t. If the study doesn’t have a control group, then it’s difficult to attribute results to the treatment or exposure with any level of certainty.
Also, it’s important that the control group is as similar to the treated/exposed group as possible. The best way to achieve this is to randomly assign some people to be in the treated/exposed group and some people to be in the control group. This is what happens in a randomised controlled trial (RCT) which is why they are considered the “gold standard” way of testing the effects of treatments and exposures. So when reading about a drug, food or treatment that is supposed to have an effect, you want to look for evidence of a control group, and ideally evidence that the study was an RCT. Without either, retain some healthy scepticism.
Did the study actually assess what’s in the headline?
This one is a bit tricky to explain without going into a lot of detail about “proxy outcomes”. To avoid doing that, here is the key thought: the research study needs to have examined what is being talked about in the headline and article. (Somewhat alarmingly, this isn’t always the case.) For example, you might read a headline that claims “Tomatoes reduce the risk of heart attacks”. What you need to look for is evidence that the study actually looked at heart attacks. You might instead see that the study found that tomatoes reduce blood pressure. This means that someone has extrapolated that tomatoes must also impact heart attacks, as high blood pressure is a risk factor for heart attacks. Sometimes these extrapolations will prove to be true, but other times they won’t. So if a news story is focusing on a health outcome that was not examined by the research, treat it with a grain of salt.
Who paid for and conducted the study?
This is a somewhat cynical point, but one that’s worth making. The majority of trials today are funded by manufacturers of the product being tested – be it a drug, vitamin cream or foodstuff. This means they have a vested interest in the results of the trial which can affect what the researchers find and report in all sorts of conscious and unconscious ways. This is not to say that all manufacturer-sponsored trials are unreliable. Many are very good. But it’s worth looking to see who funded the study to sniff out a potential conflict of interest for yourself.
How can I find out more?
It’s not possible to cover all the questions that need to be asked about research studies in a short article, but we’ve covered some of the major ones. For more, go to Behind the Headlines at www.nhs.uk/news for daily breakdowns of health care stories in the media.
See also: THCB review of health care journalist Robert Davis' book, "The Healthy Skeptic."
Dr. Alicia White is Bazian's Health Research Reviewer Manager. She received her doctorate from the University of Manchester and worked as a Postdoctoral Research Fellow in the Department of Pediatrics and Child Health at University College London before joining Bazian.
Tuesday, January 27, 2009
MYELIN is the fatty protein which creates an insulating sheath to protect nerve cells called AXONS. Myelin is part of the white matter in the brain and helps the electrical impulses of communication between the brain and parts of the body travel more quickly and efficiently. (see The Myelin Project for more information)
LESIONS occur where nerves have been demyelinated. So how does that happen?
The process of DEMYELINATION begins with inflammation. In the case of multiple sclerosis this happens in the CENTRAL NERVOUS SYSTEM (CNS) consisting of the brain and the spinal cord.
Think for a moment of a time when you accidentally cut a finger and decided against washing the wound immediately. The invaders of germs and bacteria are detected by the IMMUNE SYSTEM which sends in a team of specialized white blood cells, called LEUKOCYTES, to fight and destroy the invaders. Perhaps the wound became red and inflamed while the battle was underway.
In multiple sclerosis, a breach in the Blood-Brain-Barrier allows specialized white blood cells, called T-CELLS, to travel from the blood stream into the CNS. Once these ‘killer’ T Cells mistake myelin for foreign invaders and go on the attack, they produce CYTOKINES which destroy myelin and which also recruit MACROPHAGES to help destroy myelin and cut the nerve fibers.
Rest this post in its entirety:
Beginner's Guide to MS: What is a Lesion?
Monday, January 26, 2009
Just a quick note to say I haven't forgotten you. It's amazing just how many posts there are to read in my Google Reader. You guys are writing so much. :)
Also...if you've been by here recently, you might notice some changes. I've been trying to update and freshen the look of the blog. But just like when you really clean a house, things always get messier first.
Sunday, January 25, 2009
Extempore Epistle to Gavin Hamilton, Esq.
To you, sir, this summons I've sent,
Pray, whip till the pownie is freathing;
But if you demand what I want,
I honestly answer you-naething.
Ne'er scorn a poor Poet like me,
For idly just living and breathing,
While people of every degree
Are busy employed about-naething.
Poor Centum-per-centum may fast,
And grumble his hurdies their claithing,
He'll find, when the balance is cast,
He's gane to the devil for-naething.
The courtier cringes and bows,
Ambition has likewise its plaything;
A coronet beams on his brows;
And what is a coronet-naething.
Some quarrel the Presbyter gown,
Some quarrel Episcopal graithing;
But every good fellow will own
Their quarrel is a' about-naething.
The lover may sparkle and glow,
Approaching his bonie bit gay thing:
But marriage will soon let him know
He's gotten-a buskit up naething.
The Poet may jingle and rhyme,
In hopes of a laureate wreathing,
And when he has wasted his time,
He's kindly rewarded wi'-naething.
The thundering bully may rage,
And swagger and swear like a heathen;
But collar him fast, I'll engage,
You'll find that his courage is-naething.
Last night wi' a feminine whig-
A Poet she couldna put faith in;
But soon we grew lovingly big,
I taught her, her terrors were naething.
Her whigship was wonderful pleased,
But charmingly tickled wi' ae thing,
Her fingers I lovingly squeezed,
And kissed her, and promised her-naething.
The priest anathemas may threat-
Predicament, sir, that we're baith in;
But when honour's reveille is beat,
The holy artillery's naething.
And now I must mount on the wave-
My voyage perhaps there is death in;
But what is a watery grave?
The drowning a Poet is naething.
And now, as grim death's in my thought,
To you, sir, I make this bequeathing;
My service as long as ye've ought,
And my friendship, by God, when ye've naething.
Saturday, January 24, 2009
Dangers of Online Communities, Cyberchondriacs, Bullies, and Malingerers
Some of you may remember that I was talking about a particular MS Forum at which the members would act like schoolyard bullies and cliques. I've had conversations with fellow bloggers regarding this site and those who seek to maintain the center of attention.
Within any social networking community which caters to the chronically ill, there may be participants who take their hypochondriac tendencies and become cyberchondriacs. Also there may be folks who pretend to have the illness in question in order to find a group of sincerely supportive people in which to feel welcomed.
This opens the door to the question - what are some dangers and drawbacks to online disease-specific communities and forums? what do you do when bullying, stalking, and harassment get out of control?
What I'd like you to do is create a post related to this topic and submit it for the Carnival. I've already got some input on this would like to hear what everybody has to say.
Friday, January 23, 2009
Don’t you just sometimes wish that we lived in one of those sci-fi movies, like The Terminator, where a liquid metal body is capable of repairing itself. How cool would that be?
Imagine this scenario involving a minor failure in the central nervous system -
“Houston, we have a problem. Minor breach in the myelin sheath at level C5 right side of the spinal column.”
Houston: “Fear not, CNS control. We’ll send in the liquid myelin repair team. You’ll be patched up and ready to roll in ten.”
“Hey, I see them comin’ towards the spinal cord, now. Thanks so much, Houston.”
Fortunately, many people living with MS continue to be gainfully employed and manage to have a fulfilling family and social life. There’s nothing in the MS Manual that says you must immediately give up these activities and goals upon diagnosis.
Read this post in its entirety:
What Will Tomorrow Bring?
Thursday, January 22, 2009
Terminal vs. Chronic
A diagnosis of multiple sclerosis is unlike one for cancer. In breast cancer, for instance, the patient is able to “beat cancer” and live on free of that disease. MS can not be ‘beaten’ but the symptoms can be managed. This is one reason to have an excellent relationship with a neurologist who specializes in MS and encourages team participation in managing MS head-on.
Except in a very rare form of the disease which affects only 1% of all MS sufferers, multiple sclerosis is not a fatal disease. The MS patient has close to the same life-expectancy as does someone without MS. Please keep in mind, however, that the complications which come with having MS may contribute to an earlier decline in health. Again, stay with a good doctor and keep as active and healthy as possible.
Wheelchair or Not
Statistically, only about 25% of persons with MS will need a wheelchair full-time. That means 75% of MS patients will not end up in a wheelchair. That’s really a comforting statistic.
Read this post in its entirety:
Beginner's Guide to MS: What is my Prognosis?
Wednesday, January 21, 2009
My neurologist’s office provides extra services (free of charge) to MS patients in the local area. These include an annual workshop which focuses on updates in the field of multiple sclerosis research, a monthly support group meeting for those with MS, and most importantly a special monthly support group just for newly-diagnosed patients and their spouses. Parents and boyfriends are even welcome.
I was invited to participate in these newly-diagnosed meetings even before I was officially diagnosed. Each session focused on a single topic related to MS. Participants usually arrived early; nurse Carol set out some goodies and soda; and a bit of socializing occurred before the session began. This was the time during which patients informally compared notes and spouses often checked to see how others were coping with the changes.
When one person develops MS, the family lives with MS as dramatic as that sounds.
The National Multiple Sclerosis Society provides excellent information specifically for Caregiving and Relationships. Here are some of my favorite recommendations for keeping your relationship strong.
Read this post in its entirety:
Beginner's Guide to MS: To the Caregiver and the MS Patient
Tuesday, January 20, 2009
Thanks to Dr. Val for hosting and including Brass and Ivory.
Monday, January 19, 2009
Sunday, January 18, 2009
I may sound like a self-proclaimed expert, but doesn’t each person who learns to navigate her own challenges become an expert on what affects her choices in healthcare?
So what are my qualifications?
- Diagnosed with multiple sclerosis, rheumatoid arthritis, depression, and hypothyroidism.
- Self-employed person who is insured in the Individual Health Insurance Market.
- Self-proclaimed expert in finding all the holes of over eight Prescription Assistance Programs.
Of course, we can't expect insurance companies to share territories. LOL. Additionally I am one of the relatively few persons in the nation who pay both employer/employee payroll taxes on the value of health insurance premiums. Lucky me.
It wasn’t until being diagnosed with multiple sclerosis in 2005 that I discovered the pitfalls in deceptively vague insurance policy wording which leaves me exposed to $30,000 in annual pharmaceutical costs of which insurance will only cover $1500. My original policy (which I do have in hardcopy) indicates that I would be covered at 90% after reaching that $1500 limit, but Carefirst has since “refined” the wording and I’m responsible for the full remaining cost.
If I had access to group health insurance, rather than relying on a policy from the individual insurance market, I would likely be much more protected from catastrophic costs than I currently am.
I was interviewed for the Winter 08/09 edition of Momentum Magazine published by the National Multiple Sclerosis Society. Below is an excerpt which focuses on the need to prepare the financial future - “Ensure my Insurance.” Crazy concept, really!! Please keep in mind that my insurance coverage was underwritten, thus much less costly than it would be otherwise with my multitude of pre-existing conditions.
Planning to put money where your future is: Insurance and Savings
For Lisa Emrich, $325 a month is a small price to pay for ensuring her insurance.
That's how much she spends now on her individual health insurance. As a self-employed musician and music teacher, she was shopping for a policy that would pay for her MS needs. [MS drugs, specifically] Insurance brokers advised her to hold onto her current insurance for dear life. So even though she could have been added to her boyfriend's insurance policy when the couple moved in together, she said she's unlikely to let her own insurance go. You know, just in case.
"It's sort of an insurance policy for an insurance policy," said Emrich, 40, who lives in Washington, D.C. "If anything did happen--if he changed jobs--paying an extra $325 a month might be a good investment."
Since her diagnosis in 2005, Emrich has made several other good investments: She opened a Self-Employed Pension account and an Individual Retirement Account.
She's lucky. She's always been a good saver. But even if you don't have that advantage, you should still think about how you can protect yourself financially. Some people with MS work without much interruption in their earning power for decades. For others, sudden symptom progression leaves them without work--and without health insurance. For everyone, financial planning is one of the most important tools to protect against the unpredictable.
I may sound jaded when it comes to health insurance, likely because I am. However, I do appreciate the 90% coverage I have for most other health care costs. Let me give you an example of how this works in the real world.
MS patients are often recommended to undergo annual MRI testing in order to monitor disease activity and effect of their disease-modifying treatment. I experienced a serious relapse of my MS last spring and spent an afternoon lounging in the MRI machine.
- My out-of-pocket cost for the MRI = $500.
- My out-of-pocket cost for the IVSM (5-day Intravenous Solumedrol treatment) = $200.
- Co-pays for six neurology appointments throughout the year = $150.
- Co-pays for four rheumatology appointments = $100.
- Co-pays for two primary care appointments = $50.
- Co-pays for a limit of 20 mental health appointments = $500.
- Any other mental health appointments are 100% out-of-pocket = ouch.
- Cost of co-pays and uncovered pharmaceutical costs = Don’t Even Ask!!!
What’s a little money when we’re talking personal health and the delay of disability?
- Health Insurance Premiums = $3900
- Tax on Insurance Premiums = ~$585
- Out-of-Pocket Medical Costs = $1500+
- Drug and Medical Deductibles = $200
- Co-pays for Covered Drugs = $500
- Co-pays for Generic Drugs = $315
- Cost to Qualify for Pharmaceutical Assistance = Earning below 200% FPL
What else is a musician, freelance writer, chronic illness patient, health policy enthusiast to do?
Welcome to the reality of the financial difficulties of living with chronic illness and being under-insured. This experience is priceless, especially when compared to examining health policy reform from the safety of an academic, think tank, or professional appointment.
It's time for expert chronic illness patients to speak up and have their concerns heard. The new Administration is listening so start talking!!!!
Saturday, January 17, 2009
Of the ten people who participated in the chat, three of us are diagnosed with both multiple sclerosis AND rheumatoid arthritis. One of those three is more recently diagnosed with lupus as well. Her name is Nancy and she asked me about my diagnosis and treatment choices.
It was interesting that 30% of the participants in that one chat session were diagnosed with at least two autoimmune disorders, including MS and RA. I am aware of a few more MS bloggers who have the same diagnoses. If the National MS Disease Registry Act ever becomes a law, then we will have more information about these “double-dipper autoimmunies.” (Don’t worry about researching that phrase, I just made it up.)
So here is the abridged historical version of my diagnosis with MS and RA.
Background: In college I was a music major, piano performance and instrumental music education, and had planned to be a band director. Turns out I have trouble thinking straight with too much sound and stimulus coming at me at once. So I proceeded to get a graduate degree in horn performance and from there a doctorate in music literature and brass pedagogy with minors in music theory and natural horn performance. (Side note: Musicians often practice and perform under situations of physical pain and discomfort.)
In 1993, I experienced some vision problems and eye care on campus was provided within the School of Optometry. Eventually I underwent MRI scans looking for a possible brain tumor, but nothing was found out of the ordinary.
Read this post in its entirety:
"autoimmunies r'us" - A Diagnosis of Multiple Sclerosis and Rheumatoid Arthritis
Thursday, January 15, 2009
Amsterdam, The Netherlands
Primary Progressive MS diagnosed 2.5 years ago
Blogs at Access Denied-Living with Multiple Sclerosis
The meaning of life is to enjoy it, that's it nothing more and nothing less.
It's easier than you think you have to always remind yourself that there is always more than one perspective, view of any moment.
When you are down it's very difficult to see the beauty that is all around us as it is to be positive.
But it is very important even imperative to be positive
In order to refind the positive try to look at things from various perspectives.
It's quite mechanical at first but it will be until the depression lifts and you can be positive again.
When you start to express yourself fully again and then you can once again see the beauty around you and within yourself.
Recently been having a lot of very good days, not my body just my mind, luckily the weather has been generally good too, most days blue skies and sun.
Makes me aware again how short life is and that it's the only one we have, don't know about other people but recall worrying so much about things that did not matter as if I had to be perfect and this is a dress rehearsal for life and not the real thing.
Aware too that the MS has progressed faster than we thought it would, wish I were wrong and hope that I am but if it carries on as it has then in another year I won't be able to sit up and eat and talking and breathing independently won't be possible anymore.
Then I shall exercise my right in Dutch law and get my doctor to help me die, it's not something that I look forward to hate the idea of not being here with my darling Richie and all you lovely people.
Richie said that I was getting ready to die which is not entirely correct as I am doing everything to enjoy my life now and what I have which is lots and the last thing that I want is to die.
But I will do the only difference for me its sooner rather than later and won't be a surprise thing.
Really wanted to get really old with my beautiful darling Richie was looking forward to it very much and still am.
My life and my dreams are far from over, intend to really enjoy this Christmas.
Day by Day
I have done well to reclaim my life but only mentally and not physically as I needed a wheelchair for getting about outside right away and within 3 months of diagnosis I could not walk down the steps anymore.
After 4 months was full time in wheelchair and after another 5 months couldn’t get out of the chair anymore and transfer to an ordinary chair or to bed or shower chair and needed help with everything.
Could still write and cook a bit, simple things like like scrambled eggs or stir fry something prepared for me to use and could still use knife and fork and hold a glass or cup in one hand and eat with the other hand.
Had additional stress as we lived on the second floor without a lift so was stuck indoors for about a year only getting out twice a week to rehab when I was carried down the steps by the men from the mobility bus and their scary chair.
Sadly by the time we moved a year after diagnosis could not go out on my own as my hands could no longer function very well, could not use a key or open doors or even my purse.
I needed help with everything but could still type and pick up things and eat, could do things with both hands by the end of summer a year after diagnosis I had a catheter and could only type with one finger and needed even more help.
Now 2 years and 4 months later I am totally handicapped and need everything done for me.
One good thing now is that I found myself again and no longer feel useless and somehow less of a person and a woman, now I know that I am still the same person still as dynamic as ever and still the same sharpness.
Had to get through a morass of feelings to get here and I have by experiencing all the highs and lows of the last couple of years and thinking things through and refinding my sense of humour.
Now I have reached where I am now which is in a lot of discomfort and pain and in bed all the time because of the nasty pressure sore and can now consciously enjoy everything that I have like Richie and his love and care and a nice flat, friends and our dogs and the fact that I have realized that my body is crap but my mind is fine, in good shape and life is good.
Taking each day one at a time, now look forward to our wedding anniversary on 19 December and then Winter Solstice and Christmas.
Do You Feel Lucky Today?
Find it difficult to deal with questions such as:
What does the doctor say?
In my case nothing as they do not know and can not make a prognosis.
Or are you any better?
No and I won't be better.
Or about the wound when do the doctors think it will heal?
They have no idea and say slowly.
It's very worrying to have an illness where doctors can not help me which is weird as we are all brought up to think the doctors can always help.
Just not with something like primary progressive MS then doctors and patients have to gamble.
New Year's Resolutions
Really noticing that my condition is getting worse, I am losing strength for example the muscles in my back are really weak as I have been lying in bed since 21st August.
My back is getting so weak that I find myself slumping forwards after have sat for a wee while in front of the exercise machine plus finding some simple things more difficult these days.
Some days find typing with my one usable finger is really difficult one minute it is ok and then I can't click on anything say open my mail or just sending a mail or copying and pasting or just clicking on a mail to open and read.
And eating is horribly frustrating as I can't sit up enough and eating in a slumped position is difficult plus holding the fork/spoon or cup is often very difficult.
These days I am also in constant discomfort and pain which really wears me down, try my best to remain positive but sometimes it's not easy.
My big problem is that in my desire to remain positive I do not acknowledge what is happening plus in my desire to not only be positive but in order not to burden others with all the details of the progression of the MS I hardly say anything about what is happening.
Really weird way to behave and does not protect anyone, realize too that have been keeping lots to myself so have not talked about the fact that I know that my condition is deteriorating which means that I won't be alive for as long as I had hoped and that is strange to think about and to contemplate dying sooner than had thought and want.
Today has been a reasonable day had a few spasms in my legs one big one when the doctor visited and the the chip off my tooth and the bad news from Richie that I can't do the exercise machine everyday as sitting up in the shower chair has caused soreness and irritation in the skin around the wound.
The shower chair has a cut out bit around the bottom and the edge of the cut out bit has stressed the skin around the wound which is causing blisters and soreness and dry rough skin.
Not good so we will have to be really careful now as the wound is still healing and getting smaller though it is still quite big it's now 4cm.
It is taking a long time for the pressure sore to heal but it is now halfway healed so it's crucial that the progress is maintained.
Thanks for all the support.
A big thank you to all the wonderful people in the US who collected money for me recently which will help me to get an alternating air pressure wheelchair cushion.
They raised 600 us dollars which is brilliant and that will be put towards the 2,900 euros that the cushion costs here.
Thanks for all your support it is very appreciated.
Given me a huge boost and that has helped me to cope with having to be in bed for so long.
Thanks all you wonderful people.
This concludes the 27th edition of the Carnival.
Monday, January 12, 2009
"Whoa. Be careful, you're with folks who are only one generation removed from some Dallas Cowboys fans."
He laughs. "Callas Dowboys, huh?"
I look at him quizzingly. "What....wait, did I just say that?" And I look to someone else in the room who nods.
He says it again, but the way I had sounded - Callous Dowelboys!!
Well, from here the conversation turned to how he might wish to use my new phrase sometime in the future.
In the meantime, I'm still trying to think it and say it correctly.....and having a hard time. I am, however, able to laugh at myself. One of the things which came to mind was a post I wrote last summer - Watch It, Smartie Pants.
What we are talking about is Apraxia of Speech, also known as verbal apraxia or dyspraxia, which is very mild in my case. It is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently, but is not due to weakness or paralysis of the speech muscles.
Here is a bit of what the National Institute on Deafness and other Communication Disorders (NIDCD) has to say about symptoms -
"People with either form of apraxia of speech [acquired or developmental] may have a number of different speech characteristics, or symptoms. One of the most notable symptoms is difficulty putting sounds and syllables together in the correct order to form words. Longer or more complex words are usually harder to say than shorter or simpler words. People with apraxia of speech also tend to make inconsistent mistakes when speaking. For example, they may say a difficult word correctly but then have trouble repeating it, or they may be able to say a particular sound one day and have trouble with the same sound the next day. People with apraxia of speech often appear to be groping for the right sound or word, and may try saying a word several times before they say it correctly. Another common characteristic of apraxia of speech is the incorrect use of "prosody" -- that is, the varying rhythms, stresses, and inflections of speech that are used to help express meaning."There are other types of Apraxia as are outlined by the National Institute of Neurological Disorders and Stroke (NINDS) -
- Buccofacial or orofacial apraxia (the inability to carry out facial movements on command such as licking lips, whistling, coughing, or winking)
- Limb-kinetic apraxia (the inability to make fine, precise movements with an arm or leg)
- Ideomotor apraxia (the inability to make the proper movement in response to a verbal command)
- Ideational apraxia (the inability to coordinate activities with multiple, sequential movements, such as dressing, eating, and bathing)
- Verbal apraxia (difficulty coordinating mouth and speech movements)
- Constructional apraxia (the inability to copy, draw, or construct simple figures)
- Oculomotor apraxia (difficulty moving the eyes on command)
In the meantime, there'll be no cheering in this house for any Callous Dowelboys, or Cowless Cowboys, or Dallas Dollboys, or whatever!!!
Thursday, January 8, 2009
First of all, thank you guys so much for the support you freely give to me. I appreciate that more than you probably realize.
It's so cool that you've voted for me in the Best Patient's Blog category of Medgadget's annual Best Medblogs awards. If you haven't yet, you can do that here (but only one vote per IP address is allowed).
According to Feedburner there are over 120 folks subscribed to my dribblings, which doesn't count subscriptions through Google (I think). I don't know who you all are, but thanks for turning in. I suspect that there have been quite a few pharma-related subscribers. But lately, I've been giving pharma an easy time of it. Maybe I need to turn my head in their direction again.
Since I started writing for The Health Central Network, I haven't posted as frequently on my own blog. I'm sorry for that. Health Central has been getting some of my better work, and with some restructuring they are doing, I need to evaluate how best to spend my limited energies.
Speaking of energies, physical therapy is going well and I'm slowly beginning to see some changes. Walking with more confidence. Having a bit more endurance. Getting stronger. All very good things.
I wonder, though, if I haven't just traveled through a mild exacerbation. I'm thinking this because I was experiencing more numbness and tingling in my hands (again) and the difficulty standing up had come back (or had rather not really gone away completely since August).
With this crazy disease, it's hard to know what exactly is going on. All I know is that I started to feel noticeably better in the past week.
Still struggling with mood though. Depression is such a nasty beast. Once you get complacent and comfortable at a certain level, and stop staring it eye-to-eye every day for at least a moment, it sits in the corner and begins to grow (while you're not looking) until it's big enough to barrel though things and over shadow your every move.
I am so very thankful that through this blog I have met so many wonderful people. I have developed relationships while go beyond the boundary of this screen. I love it when I can actually help somebody by offering my support and lending an understanding ear, just as there are folks in the blog world to whom I can turn in a moment of need.
It's comforting to know that there are some around here with whom I can talk about other aspects of my life besides MS. You know who you are and I thank you for that.
Something else that's been hanging over me - I've been neglectful in keeping up with propering labeling posts. If I'm not posting as frequently in the near future, hopefully I'm adding labels and tags so that visitors can find what stuff there is here more easily. So some housekeeping is in order.
So......if you're still reading this, I've got to say "WOW". You are dedicated.
I must say that tonight is a big night. It is the football game which will decide the National Championship team for the 2008 College football season. My vote goes to the Oklahoma Sooners. Oklahoma is playing Florida tonight at 8:00pm EST.
So that's it for now. Thank you for listening.
Tuesday, January 6, 2009
The finalists have been announced by Medgadget for the 2008 Medical Blog Awards. However, one of my favorite blogs did not make the finals. I had hoped to vote for Mind, Soul, and Body - my very favorite child neurologist blogger.
Fortunately, Brass and Ivory DID make the finals. WhooHoo!!
So please head over here and vote for YOUR favorite MS Blogger. Voting opens Jan 6th and continues through the 17th. Head over there and let our voices be heard...
Because already in the Best Patient Weblog category:
ButYouDontLookSick (Lupus and Chronic Illness) has 46 votes.
Six Until Me (Diabetes) has 64 votes.
Survive the Journey (Cushing's Disease) has 24 votes.
The full list of Finalists can be found here at MedGadget.
Some of my other favorites are in the running:
Voting opens Jan 6th and continues through the 17th.
Saturday, January 3, 2009
But the one thing which just might pull me away from the computer, and hence the blogosphere, is my newest toy. Yes, that's right. I've dipped into the world of Wii.
I even created my own mini Mii today.
It's sad though.
When you set-up your mini self, and go through the profile stuff, the image of Mii adjusts itself to your weight.
Yikes. Didn't expect to see my Mii plump up so. lol.
So if you're wondering where I'm at... I could be playing games.
To my fellow Wii-ians, I'll see you on the skyslopes.
Thursday, January 1, 2009
A choir of spirits, altos all
Singing a sweet serenade
Glassy and silver, humming, they fall
Darting, they quickly cascade
Crisp amber leaves, glossy gold
under billows of low cast sky
blowing in waves, muddy and cold
casting off drops as they fly
A melody risen of unknown birth
Musicians from mist gathered gray
Heaven sent fingers, playing the earth
Washing my troubles away
Shauna discusses exciting new technology - The Halifax Injector.
I get excited about ordinary things sometimes. An unexpected cup of coffee from a listener on his way to work, an unexpected e-mail from a high school friend, a pleasant note left under my apartment door from a neighbour.
And I get excited when I hear about innovations and developments that occur in my city. This week, the Halifax Injector was finally revealed to the public. A surgical tool, the "device can be programmed by a touch screen to deliver precise quantities of stem cells to very specific areas deep inside the brain".
Over the years, the use of stem cells in the treatment of Parkinson's Disease has increased. Remember when Muhammad Ali had a fetal cell transplant to try and control his PD? We've come a long way since then and the Halifax Injector is another positive step.
You may be wondering about the mention of PD on what is basically an MS blog. First, there is PD on my dad's side of the family, two aunts having suffered and died from it, and a grandfather and an uncle with PD like symptoms (though to the best of my knowledge, they were never diagnosed with it). My mother and I have watched my father over the years for any tell tale symptoms (and I'm happy to say we haven't observed any).
Secondly, this instrument will have applications for drug delivery. Imagine being able to put a drug precisely where it is needed instead of injecting into a leg muscle and waiting for the body's systems to process the drug, losing some efficacy to metabolism.
Thirdly, the Injector was developed by a team of students, doctors, and researchers in fields of engineering, physics, medicine, and computer science. What a combination of minds! One of the students was just beginning his education in a local Community College when he joined the team and I can only imagine the impact his involvement will have on his future job prospects as an electrical engineering technologist.
I know one of the doctors on the team and hope to talk to him in the new year about the implications of this device on other neurological conditions.
Excerpts from Nadja's thought-provoking, must-read post
I have thought long and hard about what changes I would like to make in myself in the coming year. There are a few but I feel that if I really work hard on just one or two that many of the others may fall into place. One thing that MS has really shown me is that each day is a chance to reinvent oneself. Sometimes this is easier said than done and so I like the idea of looking toward the New Year as a clean slate where I can still change my life for the better.
This all leads to my actual resolution. My resolution is to work hard to not allow little things to make me so anxious and overwhelmed. In order to achieve this difficult goal, there are a few things I need to do....
I look at what I have listed and wonder if it is enough or if I need to find something more. I think that these things will hold me for the short term as I work on my resolution but in the long term, I will need to find other things to drive and entertain me. I will continue to seek answers within myself in the coming year even as I work toward my resolution.
This concludes the 26th edition of the Carnival.