“Likely” Diagnosis – What my provider says

So, I did what I could to forget all about the information I received on Friday… I didn’t say I was successful.  I just have to post this page that the medical system that has been attending to me over the course of a few years and two bouts of Transverse Myelitis. http://my.clevelandclinic.org/disorders/Sarcoidosis/hic_Sarcoidosis_Treatment_Options.aspx

I can’t help focus on the specific of the treatment that I am set to undergo…

  • Infliximab or adalimumab: These medications, which are given as an intravenous injection once per month or under the skin (subcutaneous injection), have been used recently for patients with severe sarcoidosis. They are usually used after other options are not successful or not tolerated.

I have to say that I grow more skeptical as time passes.  Again this has gone for several years.  Originally after TM and soon to follow and almost fatal DIC episode, the allergy/immunology experts said I probably had CVIDS (Common Variable Immune Deficiency Syndrome), but most patients who had it required constant infusions and suffered severe symptoms frequently.  The diagnosis was basically shelved.  Of course lymphoma and Hodgkins have come up over and over as well.  Never was a long term treatment plan suggested, heck all of the physical rehab they said I needed never came either until I took matters into my own hands.  Another curious part of their description is “They are usually used after other options are not successful or not tolerated. ”  Two occurrences of TM, the first time I was prescribed IV Prednisolone so that they could reduce the swelling and do a lumbar puncture, they never determined I had Transverse Myelitis, it wasn’t until I went to the Cleveland Clinic and saw several doctors and underwent major imaging tests before it was determined I even had TM.  Recently my Neurology doctor said, yep that is a TM reoccurrence and we will get you set up for some IV steroids.  I don’t like them and they are certainly no cure but I never said I couldn’t tolerate them.

Yeah I guess I am just thinking about it too much but it just isn’t adding up at this point.  I would think about a second opinion but I don’t have the time I can take from work at this point to pursue other opinions.

So now I have a “likely” diagnosis, one which has never been mentioned before and lets get treated?  Huh?  The treatment cites “severe” sarcoidosis…  Where did severe come from considering there is no definitive diagnosis.  I did read how Sarcoidosis can be difficult to diagnose and my initial biopsy didn’t show the granuloma they expected but additional tests done days later had markers.  Again how has “severe” been warranted? There seem to be several treatments before we reach the severe level.  Yes all the questions I should have asked my doctor at the time but panic set it and I didn’t really have the composure to form such questions.  I will have to take this text and form it in a question and send to the doctors but it was nice to think out loud and record it here 😉

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