Not new, Not dx....new medicine...unsure

[Sewwhat39]

Hello. Well, it's been almost a year since I first posted here. Thought I was DX by my doc, thought MS was a 'yep you have it, here is your treatment' type of disease...boy was I naive.

A year later, still have lesions on brain, numbness, tingling, electrical shocks, drop foot, muscle weakness, problems writing, typing, thinking and talking at times. I have 'officially' dx of Optic neuritis, peripheral neuropathy, disturbance of skin sensation and as of today, Demyelinating disease of the central nervous system. But my neurologists (plural, I have 2 now, a general and a MS specialist), my GP, and my Rhuematologist are at mixed feelings about MS.

SOOOO, I am currently taking neurotin, nuvygil, and cymbalta. (cymbalta is also for anxiety, a condition most women on my fathers side of the family have) Now they added Imuran. I'm a bit unsure of it all. My docs have explained that basically, my immune system is attacking my central nervous system, they just can't pinpoint where.

Does any of this sound familiar? Does anyone take the Imuran? I'm worried about it, but the neurotin and nuvygil (taken for the last 6 months) have been amazing. I still feel numb and tingling, but at least it's not so severe that it's waking me up at night. (at least not most nights, lol).

Thanks.
Heather

[JerryD]

No one here can tell you about your dx, but all of the stuff you posted are the same for almost all of us. i don't know about that drug, but I have heard of neurontin and nuvigil. You are new to this MonSter, so get ready for a bumpy ride. I wish you the best of luck. Learn to be pro-active with your own treatments and health. Good Luck

[tortis]

Hi

Hi and welcome, its to bad its because of the MonSter. I am famililar with your meds but rarely see Imuran for M.S. It is usually used for transplant patients and for severe arthritis you might want to question your dr's about that drug you say you are concerned about it in your post.I am not a Dr. but I would find out why they are using it just for your peace of mind, they should have explained it to you right away. Be well and once again Welcome.
Tortis

[Momathome]

Hello

I have MS and mild lupus. My doctor has me on Imuran for my MS. I asked him about a change after my last flare and he said he wants me to stay on it. I believe that the overlap of both diseases makes him believe that Imuran will be the best defense. My last flare left me with speech difficulties and severe cognitive problems but did not affect my walking. It was difficult for me to accept these limitations. I believe that the MS has put me into a more progressive stage and Imuran may be one of the only drugs that may slow it down. I hope this makes sense. There are studies with Imuran and other ms drugs that you can read about.

[Sewwhat39]

Thanks so much for the information. I"ve spent the day researching. I feel better about the Imuran now. I am finally understanding this 'disease' I have. I guess I may always be a 'limbo' person, I actually hope I am, because that will mean they don't find any new lesions on my MRI's. It's amazing to me that after 5 years and so many doctors it take one doctor to sum it up for me. Him saying 'We know that your immune system is attacking your central nervous system, we just don't know where', made so much sense to me. As he said, if it's in the fine nerve fibers, it's rhuematological, like Lupus. If it's in my brain or spine, it's MS. After reading about Imuran and both, I can see why they (the neurologist and the rhuematologist) chose that drug. Goodness. I feel like a need a medical degree sometimes just to understand my own body!!!

[ladibabe]

It is really hard to go through dx and then being un dx would seem to be a good thing if the sx would listen too. I wonder if their confusion is because of the lack of space between your lesions. Have you had a LP