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Re: FOLLOWUP Susan: Why I Haven't Taken Medication

Re: FOLLOWUP Susan: Why I Haven't Taken Medication

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Posted by Trish on July 27, 2000 at 18:14:20:

In Reply to: Re: FOLLOWUP Susan: Why I Haven't Taken Medication posted by denys on May 18, 2000 at 14:46:20:

: : MIKE: Thanks for responding to my message. I'm a little creeped out by needles in my fridge, but that's not my real fear. My real fear is aggravating MS by messing around with my immune system. I've been without medication and doing very well for more than 12 years. I'd love to talk with anyone who is also really into natural food and fitness as a means of controlling MS AND who takes (or is starting one of the ABCs now.) Are there any MS granola-heads out there? (I hate granola, but you know what I mean.) All blessings to you.
: : : The longer you wait thats where you stay.If you get worse and then start avonex, thats where you will stay! Start now and stop the slide! Are you afraid of needles?
: : : : Hi, Susan. Thought you'd like to know I've read research that indicates optic neuritis as an initial symptom is a good sign that your course may be mild. I'm not a doctor (I just read a lot) but I believe it's possible you could never develop symptoms elsewhere. I'm not positive it was my first symptom, but I believe I got optic neuritis when I was 20. 5 years later I got a different, very mild, symptom, then a different one which led to my diagnosis. I haven't had another exacerbation until this year (I'm 37 now.) I'm the person who wrote earlier--I'm majorly conflicted about starting Avonex (despite doctors' orders) because I have had such success without it. I did not "cure" myself with natural food and a low fat diet, but I definitely HELPED myself. I recommend adopting this way of eating (along with no caffeine, alcohol, cigarettes or artificial sweeteners) to everyone with MS. I avoid anything that can potentially screw around with my brain (all of the above.) BUT, consequently, this lifestyle is making the concept of starting Avonex so difficult to adjust to. It's like changing everything I believe in and have relied so faithfully upon. It's really tough for me to do (that's why I haven't started yet.) I'm worried about jinxing myself.

: hi, talia. i understand your reluctance to begin drug therapy. i have been diagnosed for 4 years, but had undiagnosed symptoms for at least 5 years before that. i have been very lucky in that my symptoms have been pretty minor. i have discussed avonex with my neurologist, and voiced my reluctance to take it. this has little to do with "fear of needles," and more to do with fear of not knowing in the future if my fairly benign condition is due to the drug or to how i try to live. once you start, you'd be afraid to ever stop, right? and why use the stuff if you are really doing OK without it? my doctor completely supports my decision. if things get worse for me, i will re-evaluate.
: by the way, i am not exactly a "granola-head," (thought i do like granola), but i do try to be careful about what i eat. i eat very little meat, shun artificial sweeteners and flavors, and buy organic where i can. i have a hard time avoiding dairy, but buy organic milk & cheese when i can. i also take the supplements recommended by dr. andrew weil for MS, which are his basic anti-oxident vitamins plus lecithin and, of course, evening primrose oil.
: good luck to you! -- denys

I was really happy to find your messages because I am going through this same drug dilemma. I was diagnosed in June, but believe I had undiagnosed symptoms in 1996.

My symptoms in June were mild (numbness, tinglins, some balance problems) but I did require a high dose steroid treatment. Now I'm feeling fine and wondering whether I want to start these heavy duty interferons, go the holistic route (diet and antioxidants) or do both. If I start drugs, I'll never know whether I really needed them or not. If I don't, I run the risk of getting worse with another attack.

I would love to hear from people who did NOT do drug therapy.

Trish



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