Originally Posted by Yorkiemom

I have not posted on Neurotalk for some time and had, at least for a time, improved. I still see some friendly and familiar faces here.

I have had what is believed to be CIDP (and Sjogren's) for quite some time (1992, I believe), though things had improved to some degree until 2012, when I had to get a pacemaker. This did not set well with my body and autoimmune problems and I have been unable to reduce my Prednisone back down to where I was when I was nearly off of it. My Cardiologist thinks that the heart issue (AV block, Mobitz Type II) relates to the autoimmune disorder.

Most recently,an Osteoporosis drug did a number on my pain level. This was followed by an injection of Depo Medrol, which my body also did not like. Picky, picky, picky... The result is I am finally going to consult a pain management anesthesiologist this week.

The Rheumatologist I see seems to be very bright, and I am happy to have someone who actually wants to help. He said that they are finding that about 20% of the patients diagnosed with Sjogren's, do not have this, but have small fiber neuropathy, which presents in a similar fashion. I think the gold standard for diagnosis is still the lip biopsy, something I would like to avoid.

It looks like the next step will be IV Gamma Globulins now. Wow! Have they increased in price!!! I could almost buy a new car for the cost of one dose...

Anyway, that's my story and I will try to be better about keeping up with
posting...

I was wondering if Silverlady was still on the boards. Anyone know?

Yorkiemom
Cathie