Do sufferers of Multiple Sclerosis always worsen and die?

Question

What is the outlook for a sufferer? Will they become completely incapacitated and need constant care? Will they eventually need hospitalisation?

Answer 1

Let me answer your last question first. MS is not a fatal disease. Sometimes, people will die from complications of MS (for example, someone with severe MS may not be able to swallow well and can choke), but MS itself does not cause death. Most people with MS have a normal or near-normal life expectancy.

The short answer to your first question is "it depends." For the large majority of people who have "Relapsing-Remitting" MS (which constitutes about 85% of sufferers at first diagnosis), after several years, their MS will change into "Secondary-Progressive" MS, where they will not have discernible exacerbations of their symptoms, but will slowly worsen without any remission.

The problem with generalization and MS is that MS treats everyone who gets it completely differently. What symptoms, and for how long, are completely random with each MS sufferer. Additionally, how quickly one can get on one of the MS "disease-modifying" drugs (the CRAB drugs -- Copaxone, Rebif, Avonex, Betaseron) after their first exacerbation will also determine how quickly nerve damage is done and, potentially, how long until they change from RRMS to SPMS. Without medication, approximately 50% of patients with RRMS can expect to go about 10 years before the change. On meds, no one really knows. We're only about 15 years into the medication phase of the disease. It's possible that one could go 20 years or longer before their disease changes. There is no long-term data to show whether or not the medications delay the onset of SPMS significantly, but most doctors believe that it will.

And once they do change, the level of incapacitation (known as their EDSS score -- Expanded Disability Status Scale) will also vary. Some will only need a cane or a walker (EDSS 6.0 - 6.5). Some will be weelchair-bound (EDSS 7.0 - 7.5). Later in life, a small number may be bedridden (EDSS 8.0 - 9.5). Part of that depends on how quickly they progressed in the first part of the disease. They could be anywhere from EDSS 1.0 (no disability, minimal signs in one functional system) to EDSS 6.0 (intermittent or unilateral constant assistance (cane, crutch, brace) required to walk about 100 meters with or without resting) in their RRMS phase before they switch to their SPMS phase. However, the majority of people with MS will not become severely disabled.

MS is a very individualized disease, and affects each person that has it differently. The great thing about it though is that there is hope. The disease-modifying drugs show great promise in helping to slow the onset of symptoms and lengthen the time between exacerbations as well as their severity. Plus, new treatments and discoveries are being made almost daily, so while there are no "restorative" medicines yet (once nerve damage is done, it is permanent), we could have a viable nerve-restoring medication within the next ten years. The very important points to remember about MS (from the brochure "Just the Facts" from the National MS Society):

* MS is a chronic, unpredictable neurological disease that affects the central nervous system.

* MS is not contagious and is not directly inherited.

* Most people with MS have a normal or near-normal life expectancy.

* The majority of people with MS do not become severely disabled.

* There are now FDA-approved medications that have been shown to "modify" or slow down the underlying course of MS.

I am no expert in MS, but I am intimately aware of it, as I too have MS. Stay strong and always have hope!

Answer 2

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Answer 3

Most of the people I know have the kind that relapses and then remits. And they don't get hospitalized too often. I just know a couple of people who are not ambulatory. The treatments are a lot better these days. The websites are really helpful and can put you in touch with a lot of people, some whose MS will match the person you are asking about. Best of luck to you! There is hope!!

Answer 4

Not everyone will end up with the same fate. Some will be severe like that, but many do not. And that is a much higher number of people. I worried about the same things when I was first diagnosed. But you have to live like you aren't scared even if you really are.

Answer 5

I have read "MS is not a death sentence" and it isnt. It just affects your quality of life.

Medications and advancing science are on our side. Depending on their diagnosis (and when.. 20 years ago diagnosed, things are a little different than recently), they may live relatively normal lives with proper medication and taking good care of themselves. Some may end up in a wheelchair. Some may never need it.

Please read all you can on the internet, books, talk to pharmacists and to your doctor (or whoevers doctor this is)... and think positive :)

Answer 6

Check out Prokarin on the web. I have heard really good reports on this and how it helps persons with MS. Also check out MonaVie. I can put you in touch with someone with MS who is using both products and doing great. She can tell you how to get both non-rx products and how to use them.

Answer 7

No...
http://www.ginakopera.com/
and:
http://www.drmcdougall.com/stars/050812tasic.html

The answer seems to be in having a positive attitude and adopting a healthy diet.