Re: Spinal sarc

[Guest guest]

Finally blood work indicated high ACE level, now back on prednisone. I'm still walking unsteady and erratic, and the doctors cant confirmed that sarcoidosis is in my spine. While hosptialized I took battery of tests to no end, neurosarcoidosis was confirmed throughout my body. I just want to know to what degree and where sarc is in my spine. What is there for me to do and Where do I go for confirmation? Your suggestion?

Marge,

I imagine they keep you on pred because of the heart involvement? You would do so well to get onto Imuran or MTX or Enbrel or Humira. I don't know that they'd put you on Remicade, but that would knock the pain out of your spine.

There are not any tests that are going to show how much sarc is in your spine. The CT's and MRI's might show "bone spurs"-- which would be sarc granulomas. Since sarc can be vascular-- it could be that the problem is in your blood vessels, which would cause swelling thru the spinal column nerves.

EMG's-- nerve tests would tell them if a certain nerve coming from the spine to the fingers is involved, but then again-- it could be the NS in the brain that is inflamming that signal area of the brain- that effects the fingers.

What you need to do is get them to put you on the heavier drugs, if they feel that your heart can handle that.

If its a matter of comfort vs long life, thats a real heavy call you might want to talk with your family about. Qualify of life is the real issue-- yeah, they can keep you alive longer, but you can't do anything-- but the meds aren't going to be a problem-- you know what I'm saying.

My heart goes out to you, I know how hard you fight this disease. Sounds like a talk with Neuro and Cardio and Pulm are all needed, and they all need to get onboard and talk to one of the experts in sarcoidosis. (Sharma, Baughmann, etc.)

Take care,

Tracie