MS--anybody on here have it?

Please define "major relapse" and congrst! I'm pulling for you!

What type of side effects were you having on the Avonex? Every injection made me exhausted and pretty much did me in for the rest of the day. Plus, it gave me horrible migraines!

Melizzy-- I took it because the "expert", my doctor, said it was the best thing available to prevent relapses. Now, I'm starting to get the idea that he is full of it and I should be looking for a new doctor. Unfortunately, I live in rural area and there are only two neurologists within 2 hours of where I live, so I'm kind of stuck with what I have unless I cna find a good doctor in the St. Louis area. Tehn, I'll make the two hour drive

Wow! I've never heard of that. Can you tell me more? Where he went, how he got into the treatment? Anything is helpful. There is so much we don'e know about this diseas.

Cool. I have a friend who goes to John Hopkins. The great strides they are making in medicine is very encouraging. I do not want tohave to use a scooter or wheelchair, but I know I may one day have to do that. I take a lot of vitamin supplements.

It was some program through Johns Hopkins hospital here in Baltimore. Apparently there was a woman who had MS and then got some form of cancer. When she was treated for the cancer the MS got a little better. I think there is some kind of study now.

Thank you. There are so many different natural supplements that it gets confusing!

I would look at taking Usana products for your MS. My wife has had MS for 6 years now and we started her on the MS treatment plan from Dr. Strand for MS. She started this treatment plan 2 weeks after her doctor telling her that she had MS. These product are pharmaceutical grade and are in the Physician Desktop Reference. The only thing I know for sure is the her last 3 MRI's (3 years) show NO increase in white lesions.

It really isn't that "simple" to diagnose MS because you have to have a certain number of each thing. I have already had a spinal tap and because of my low immune system I got a serious infection. According to the MS Society there are many factors and you should really look into that if you are going to say it is "simple" to diagnose. I have been going to doctors for six months or so just about every single day. It could still take years for me to ba fully clinically diagnosed. My blindness, however unfortunate, is permanent. I have the same levels of elevated IgG that anyone with MS could have, yet I sit and wait to hear when I will be diagnosed. It's not all that easy for everybody that has MS to be clinically diagnosed with it.

Man, I'm sorry. Devic's disease is often misdiagnosed as MS. For MS it's fairly "simple" to diagnose. They do a spinal tap. I know someone who had Devic's disease. She spent a few years thinking it was MS before they figured out it was not MS, but Devics. She too went blind, but got her sight back. Hang in there!

Who is telling you that you aren't clinically diagnosed? My stupid primary care physician tried to tell me that the diagnosis from my ophthalmologist was not sufficient. He said only a qualified neurologist could give me the diagnosis, but the first time I went to a "qualified" neurologist, he missed it. And, three years later, I had another episode, or relapse, and had a month of double vision in my right eye. That's when my eye doctor sent me for another MRI and another spinal tap and he diagnosed me first. Then it was confirmed by the spinal tap and the neurologist. It was the four visible lesions on my brain (in the MRI) that made the diagnosis pretty simple. There are other things that can mimic MS, but between an MRI and spinal tap, it's fairly obvious. You may want to look into other more recent options for treatment. A lot of beta interferon treatmetns theoretically help suppress the relapses. Most likely, the prednisone is to help restore the damage done to your optic nerves. So far, I've been lucky and though I had a single incident with my eyes, I have not suffered any permanent eye damage from teh MS. Unfortunately, my medication for the MS has given me a cataract in my left eye, but hey, they can fix that.

Yeah, NORD is currently paying my COBRA insurance. I've done pretty ok, just a lot of fatigue. I used to be able to go for days on end, but now I actually have to pace myself! The support groups around here are filled with older patients who had no access to meds and are all wheelchair bound. I can't go there.

Thank you for sharing about NORD--I can barely afford my health insurance and since my disability is still 'unrecognized' except by one or two doctors (my insurance won't pay for follow up testing and I don't have $2-$3k sitting around for this), I'm inelible for medicare or the free state program. I'll check into this tomorrow--there's light at the end of the tunnel! :)

you have primary progressive, could you please tell me what symptoms you were having?

Good to hear! I am excited about the possibility of amnio fluid containing useable stem cells! It may help us all!