Question

[Guest guest]

I was dx 2 years ago. At dx I had many lesions in my brain and neck and had

flair after flair. Many of the symptoms I now understand to be MS I have had on

and off for years. I started on Rebif and due to side-effects and continuing

flairs I had to stop it, next was copaxone and again bad side effects and flairs

so onto Tysabri. In the beginning my arm was numb and I had problems with

walking which is what my definition of mS was-lack of mobility. I am wondering

about the other symptoms like I have POTS, and swallowing issues, and that

pseudobulb...thingy that makes me act emotionally nuts. The fatigue is

absolutely overwhelming. For awhile-today will be Tysabri infusion 11, the

flairs had stopped and I was doing pretty well and now they have suddenly

started again. Had solumedrol a month ago-should have it now, in wait and see

mode. Anyway am having infections from Tysabri, also weird liver tests. Found

out at last Dr visit that am JCV positive and can only be on Tysabri " less than

2 years " since then with the flairs and the infections etc... wondering what is

the point of continuing on it. Also wondering how many others MS is different

than what they knew it to be-more internal disorders than obvious physical

disability? Seems like all these medicines hit my liver hard even

Tysabri-wondering what good it does to protect my brain and fry my liver. Also

how many take no medicine? The next drug for me is Nova.... some type of Chemo

that can only be taken for a specific amount of time. If I cannot take the

others and they do not want me in a study because afraid I will get

placebo-where do I go from here? Would love to talk to others who are in the

same boat and maybe been at this longer than me. TY

Sherri