Treatment–ummm no

So, I have been wrestling with the ideas of this “likely” diagnosis and the proposed treatment for over a week.  On one hand it takes 9 years to come up with a likely diagnosis.  On the other hand there is this treatment that seems to be fairly new and the list of side effects seems rather lengthy and honestly scared me.  That combined with the fact that the symptoms persist despite the steroid treatment.  Yes the pain was greatly reduced but not being able to use one leg is not much of an improvement, the enlarged and rather uncomfortable spleen, the nerve overload in both feet…

Well that all changed.  In the mail was a letter from my healthcare provider regarding their disapproval of the proposed treatment.  I guess I am not completely surprised but it is disappointing.  Their justification for their finding was that the treatment involving Remicade is experimental.  Don’t get me wrong, this isn’t completely surprising considering the diagnosis, as I mentioned in a previous post the doctor’s termed their diagnosis as “likely”.  I do find it a little interesting that while they claim a treatment is experimental, they offer no alternative treatments.

Over the course of a few weeks I have done some research (to include a study where a splenectomy was done to diagnosis sarcoidosis ) and this helps confirm I am just stuck in a no-win situation and like the first episode my only hope is riding out the symptoms until a point where I can start my own physical rehab.  The downside of that is that in the first episode it was about a year before I could start any rehab.

So, I guess I call the doctor tomorrow to see if she has any other great ideas, but I won’t be expecting much of an answer.  Oh yeah, the bill for the services came in… happy happy joy joy

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