Thread Tools Display Modes
Prev Previous Post   Next Post Next
Old 03-26-2014, 01:49 AM #1
Yorkiemom's Avatar
Yorkiemom Yorkiemom is offline
Member
 
Join Date: Oct 2006
Location: Texas
Posts: 761
15 yr Member
Yorkiemom Yorkiemom is offline
Member
Yorkiemom's Avatar
 
Join Date: Oct 2006
Location: Texas
Posts: 761
15 yr Member
Default CIDP, Sjogren's (?)

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
Yorkiemom is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
hopeful (03-27-2014), St George 2013 (03-28-2014), zkrp01 (12-16-2014)
 

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Hi to all/CIDP, MCTD, Osteoporosis, possible Sjogren's Yorkiemom New Member Introductions 4 03-26-2014 06:41 AM
Sjogren's Hopkins cyclelops Peripheral Neuropathy 3 01-17-2009 03:16 PM
Sjogren's angelrnblue New Member Introductions 3 10-09-2007 01:59 AM
Sjogren's board down Silverlady Peripheral Neuropathy 2 07-08-2007 10:36 PM


All times are GMT -5. The time now is 08:28 AM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.