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Nichelle
New Member


Date Joined Aug 2006
Total Posts : 1
   Posted 8/3/2006 4:46 AM (GMT -7)   
Hello,
 
  I am new to these forums although not new to MS. I have the most typical textbook case in the world. However, I remember the fear of not knowing, the frusteration at trying to get appointments, the terror of never regaining my faculties ever again. I had no health insurance and fought like hell to get on Medicaid in order to get the bank account breaking MS meds. I realize that is why most people search out these boards, and since I have insomnia tonight I thought I'd address some of these concerns.
 
  First the bad news...for those experiencing their first bout of numbness, tingling, balance issues, optic neuritis...etc etc The reason that no one is rushing you in to an appointment is that there really isn't much to be done. Yes, if you had dx'd MS they'd put you on cortiocosteroids to try to slow the flare...but this doesn't stop disease progression (and comes with its own batch of problems...in my case possibly Addison's Disease). The most common disease modifying MS meds that many take daily, or weekly only slow things down or reduce symptoms by ~30%, Copaxone increases fatigue in many people (and tests are showing a potential breast cancer link), and the interferons (Avonex, Rebif and Betaserone) make you tired, depressed, can kill your skin and give you flu-like symptoms. Plus your body can build up antibodies to these (after which the effectiveness is unknown), and studies (that have NOT been paid for by the drug companies) don't really show much effectiveness of any of these long term. Yes, they try to convince you that you NEED to take these drugs, but remember $2000 a month from every person that takes their drugs makes a multi-billion dollar a year business.
 
  Now the good news! First, your first major flare is generally your worst, and it usually resolves itself almost completely. Plus, there are a LOT of things you can do to reduce your symptoms without a diagnosis. First MS causes chemical changes in the brain, so you will likely wish to speak to your PCP about an antidepressant. There have also been studies in Oregon recently which have proven Fish Oil reduces depression in MS, it also is beneficial in other ways to help your body heal. (However, it takes around a month to begin working, so give it time!) The Swank Diet (you can Google it), has also been highly effective in reducing MS symptoms in 90% of its adherants.
 
  Other changes you can make to aleviate symptoms quit smoking! (yes, most of us with MS smoke...and smoking has been proven to speed progression in MS). Quit aspartame (diet soda/Nutrasweet)! No, aspartame does not 'cause' MS, but it can cause asymptomatic MS to become symptomatic, as well as cause horrible flares. It is a rather nasty neurotoxin, you can go to this link to find a fully referenced paper. http://www.dorway.com/bittertruth.txt (I nearly killed myself with aspartame last winter....literally!)
 
   Doing these simple things has reduced my MS symptoms signifigantly, as has avoiding stress, sleeping WHENEVER I need to (if you need a day off work to sleep...take it!), eating healthy (I don't follow Swank, but my own similar program) and exercise (especially when you are weak and don't want to! Gentle exercise helps regain strength....water aerobics and yoga are two forms highly recommended for MS).
 
  Best of Luck to everyone!
 
~Nichelle
 
(Note: If you think that I am a doctor, it means that you are not one either!)
 
 

jena1225
Regular Member


Date Joined Jul 2006
Total Posts : 35
   Posted 8/3/2006 5:20 AM (GMT -7)   
You say that the CRAB's can reduce flares by only 30% like it is a bad thing. I would think that 30% is better than nothing, no? Also, I was also scared of taking one of the CRAB's because of all the hype about the horrible side-effects, cost, etc.. However, 13 years later, I am on Betaseron, no side-effects, $50 a month, and have at least a 30% chance of reducing my progression. Well worth it in my opinion!
 
If I had not been so scared 13 years ago because of everything I heard, I may be allot better off. NO, teh drugs are not a gaurantee, but 30% is 30%.
 
Newbies - please do not hesitate to get on something that could help you!

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 8/3/2006 7:34 AM (GMT -7)   
jena1225 said...
You say that the CRAB's can reduce flares by only 30% like it is a bad thing. I would think that 30% is better than nothing, no? Also, I was also scared of taking one of the CRAB's because of all the hype about the horrible side-effects, cost, etc.. However, 13 years later, I am on Betaseron, no side-effects, $50 a month, and have at least a 30% chance of reducing my progression. Well worth it in my opinion!
 
If I had not been so scared 13 years ago because of everything I heard, I may be allot better off. NO, teh drugs are not a gaurantee, but 30% is 30%.
 
Newbies - please do not hesitate to get on something that could help you!
Thanks, Jena for your positive response.  Indeed, a 30% reduction is a GOOD thing...and that's an "average", meaning some folks may well experience an even higher percent reduction.
 
And indeed, the side effects are not "horrible" for many of us, and quite manageable.  And the cost is more like $1,000 / month (not $2,000, which was what the original poster quoted).
 
Also -- I don't know where the original poster is getting her information about long-term benefits - -but indeed, there have been many studies (yes, some by the drug companies but not all!) which indeed show that these drugs are helpful in the long term.  They've been around for 15 years now (the interferons) and continue to show benefits. So she's wrong there, too.
 
The aspartame: go to any REPUTABLE source to find that this is a red herring. If you are one of the very few people with a sensitivity to a particular chemical in aspartame, then indeed it can cause problems. Note I said "one of the very few".  Perhaps the original poster falls into that category. Otherwise, it's been shown...over and over again...to be safe for human consumption.
 
Also, "most of us with MS" DO NOT smoke. Some do. I never did. I've had MS for 23 years. Smoking is NOT linked to MS or vice-versa.  Statements like "most" and "all" are usually wrong.
 
Some of her general advice is good: stop smoking if you do; exercise when and how you can; avoid stress; watch your diet; get rest..
 
But spend some time researching the rest...and you'll find contrary conflicting and more accurate information in other reputable sites.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 8/3/2006 12:39 PM (GMT -7)   
Hi Nichelle,

Thank you for sharing your personal experiences and I'm glad you found something that works for you! My husband tried the fish oil, the diets, getting off aspartame but it really made no difference whatsoever for him in the way he was feeling. Yes, the crabs are quite expensive, but they really have made a world of difference for him in slowing progression and that in itself is one of the most important things to do in dealing with MS, at least in my opinion. I honestly can't imagine how worse off he would be if he wasn't on Copaxone. He's been taking it six years now, no side effects or problems to speak of. He had chronic fatigue before he started taking it, but it hasn't made the fatigue worse.

I do agree that getting rest, eating healthy, reducing stress, and exercise can be beneficial though.
 
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