It has been so long since I have been here and active on the forum, but I do check in time to time...un-noticed.
But now I am scared, but my life is so good right now, I don't think I should be so scared. I FEEL good, I have almost normal levels of energy, and pain is at a minimal. I think clearer then I have in a long time too. I am very thankful for all my good days, and feel a sense of accomplishment when I can make it through a day and almost, if not totally, forget that I have MS.
BUT... I went to my neuro a couple weeks ago with results in hand from an MRI taken last September... MRI was taken at random and I had no complaints at the time it was taken. It showed FOUR active lesions and TEN NEW lesions and an old lesion that has grown to almost 2cm (1cm in one year). WOW. I cried when I read this, but I am grounded in knowing that lesions DO NOT equal disability. I also know how I feel, and I feel good. I have now officially had negative reactions to ALL MS injectable meds... so I am currently not on any. My neuro suggested low dose naltrexone (sp?) or pulse high dose steroids.......... I had an MRI done two days ago to take to UCSF MS clinic for a second opnion, and there was one active lesion.
I am not too sure about living without an immune system and the thought of chemo-like therapy this early seems premature. It is what my neuro is leaning towards till the pill form of MS treatment comes out in oct... I am confused and scared about this treatment option. I know MS is about location location location... but eventually these lesions are gonna strike gold, and I fear that more then anything else. Hopefully UCSF will have some inspiring words and treatment options...
Diagnosed with Multiple Sclerosis September 2003 currently taking Rebif, Cymbalta 60mg PO QD, and Provigil 200mg PO BID.