Hey all,
Am faced with a great big decision and am looking for input. Have had MS since probably 1996, dx 2004, and since then it seems to be SPMS. Have been on Copaxone, Avonex, then back on Copaxone. Have had times off all therapy. Solumedrol treatments do not work for me, just finished 4 days in early January. All I got was pain and heartburn.
In the past few months have been having an increase in swallowing problems, this only used to happen when overheated. Now, it's all the time. This has been confirmed by XRay and speech therapy swallowing studies. There is no question there is a problem.
The neuro has attributed this progression of this symptom to an impressive lesion on my brain stem (you know, the place where all autonomic stuff begins?).
Due to the location of the lesion and this progression, the neuro (at Partners MS Center in Boston) has recommended Cytoxan treatments of 1/month for at least a year to work to halt this lesion where it is. She has offered other therapies, such as Cell Cept with Copaxone. I cannot take Tysabri (JC Virus) or Gilenya (on beta blocker) and those would be iffy anyway due to my progressive nature.
I am leaning towards going onto Cytoxan, as I think this swallowing problem is simply the tip of the iceberg if we start considering all this lesion could do, and because Cytoxan seems to be most effective in progressive forms.
I would appreciate any input people may have.
Have to add, that when diagnosed with MS, I think the first thing that came to my mind was "oh no a wheelchair someday." Huh, silly me, if I only knew then what I knew now, that wheelchair wouldn't look so bad.
Am faced with a great big decision and am looking for input. Have had MS since probably 1996, dx 2004, and since then it seems to be SPMS. Have been on Copaxone, Avonex, then back on Copaxone. Have had times off all therapy. Solumedrol treatments do not work for me, just finished 4 days in early January. All I got was pain and heartburn.
In the past few months have been having an increase in swallowing problems, this only used to happen when overheated. Now, it's all the time. This has been confirmed by XRay and speech therapy swallowing studies. There is no question there is a problem.
The neuro has attributed this progression of this symptom to an impressive lesion on my brain stem (you know, the place where all autonomic stuff begins?).
Due to the location of the lesion and this progression, the neuro (at Partners MS Center in Boston) has recommended Cytoxan treatments of 1/month for at least a year to work to halt this lesion where it is. She has offered other therapies, such as Cell Cept with Copaxone. I cannot take Tysabri (JC Virus) or Gilenya (on beta blocker) and those would be iffy anyway due to my progressive nature.
I am leaning towards going onto Cytoxan, as I think this swallowing problem is simply the tip of the iceberg if we start considering all this lesion could do, and because Cytoxan seems to be most effective in progressive forms.
I would appreciate any input people may have.
Have to add, that when diagnosed with MS, I think the first thing that came to my mind was "oh no a wheelchair someday." Huh, silly me, if I only knew then what I knew now, that wheelchair wouldn't look so bad.
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