DX 15 years ago....no current drugs. Do I start again?

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DX 15 years ago....no current drugs. Do I start again?

Postby BarbieGirl » Wed Jan 21, 2009 2:02 pm

Hello all! I was diagnosed over 15 years (age 26, now 41) and have run a pretty mild course of MS (thankfully) over those years. It all started with numbness and tinglies. Then about 3 months later, dizziness, ON, Le'Hermittes (sp)--remember all this at age 26/27. All were treated with steriods and everything returned to normal. Didn't have other bouts for almost 8 more years and then it was caused by a darn chicken pox shot (never had the pox)...ON which again completely resolved itself. Moved to a new town, found new Neuro, tried Avonex. Awful experience. Went off it to get pregnant. Had baby...no problems. Went back on Avonex. Again awful and discontinued after 3 months. No drugs since which is 6 years. One small bout of numbness cured with steriods. Lesions on brain scans have healed with maybe one or two new every two years which all heal. Well, I have stood my ground on NO MORE ABCs and neuro is pushing for Copaxone because of one new lesion (with no symptoms). He said the C is better for me as it won't have the side effects of flu as did the A. Yes, I suffer a bit from fatigue--work full time, have a busy 6 year old, who wouldn't be tired!

So I am basically looking for some input, suggestions, etc? I was going to try an oral trial (fingolimod) in Pittsburgh which is over 2 hours away from my home but not going to because of child and time constraints.

Would welcome your advice! Thank you!!

BarbieGirl DX 1993. No drugs. :o :o
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Postby jimmylegs » Wed Jan 21, 2009 3:02 pm

hi bg, i've only been dx'd since 2006 so not so much with the experience. i have no xp with pharma options but there are many here who can help you with that.
these days on tims, i am pretty much in the line of investigating the bloodwork comparisons between the 'ms range' and the 'healthy control range', nutritional symptom management, and addressing drug induced nutrient depletion with supplementation.
if any of that piques your interest, i'm your gal ;)
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Postby Sharon » Wed Jan 21, 2009 8:47 pm


In ways your story is similar to mine except I was not DX until I was 60 years of age. I had symptoms but they would usually go away to some extent. When I was finally DX'd, my lesions were not enhanced and I had no inflammation - so, I decided not to go on any of the CRAB drugs. I used diet, supplements and exercise, and alot of reading on this forum. Looking back, I made the right decision for me - I have since gone on LDN (May of 2008) and again I feel this was the right decision. My point being, you need to be proactive and take charge of your MS. Yours is different than mine, and different than others on this board. We all have similar symptoms; but they are probably not all caused by the same thing. Try to figure out "your" trigger - it could be an allergy, it could be a virus, it could be a bacteria, it could be stress. If you have inflammation, maybe a CRAB drug is what you need - but, try to figure out "why the inflammation?" Two of my triggers were stress and an allergy to calcium.

I admire you - working and a 6yr old plus MS. You have quite a bit on your plate. Again, read the forums - there is a ton of information here. Ask questions - you will be amazed at the research and the resources that are available to you from the members of ThisIsMS.

Good luck to you. If you have any questions about LDN, I would be glad to answer.

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Postby dignan » Wed Jan 21, 2009 10:43 pm

If you're not in a big hurry to get on something, there is a drug called mylinax (oral cladribine), that just finished a final phase trial last week. It is taken in pill form. The results of the trial have not been released yet. If everything goes well getting regulatory approval, it could be available in the U.S. sometime around the middle of the year. Of course we won't know if the trial was a success at least for a few more weeks.
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