Well a month after receiving notification that the treatment plan (Infliximab) was approved, the doctor has all the approvals. So early next year (in 8 days) I am set to begin. The infusion group called and set it up. While the course of treatment is monthly, the first two infusions are 14 days apart, something they call stacking.
So I guess I should be excited, thankful, something on the positive side of feelings but I can’t say I am. I feel a little more dread/apprehension than anything positive. Why? Part of it is ego, vanity, etc… something about the type of treatment I suppose. The other part is still not understanding the diagnosis, theory or connecting any of the little understanding I have with the symptoms and the treatment.
Yes, when I asked the doctor about sarcoidosis and how it was linked to Transverse Myelitis she without hesitation confirmed neurosarcoidosis. The problem with accepting that is I went years accepting Transverse Myelitis (probably easy to do since I rehabbed myself to the point where I thought I beat it) and thinking I had a clue what it was and how it was itself a single diagnosis. Do I have TM or neurosarcoidosis? I have not read anything that claims they are the same thing, do I have two issues causing my symptoms?
Admittedly the methotrexate seems to be kicking my butt, adding discomfort without reducing any of my symptoms, and I am getting very tired of dealing with the symptoms but there are certainly more questions than answers. Hopefully with this new treatment some of that can be squelched.
Oh yeah on the upside the medical coverage as well as my employer are much more open to everything that is going on… that is a Christmas present all in itself.
Thanks for listening/reading.