HopeSprings Posted November 7, 2011 Report Share Posted November 7, 2011 I feel so deflated. I had some antibody testing a few weeks ago and one was positive (it was a GM1 test) - it might have explained some things with the neuropathy (which might have explained things with the POTS). Well, he wasn't sure it meant anything so we re-tested, but before re-testing he said if it comes back positive again there might be some treatment options. I was so hopeful. Well I just got the call - it's negative and so is the Mayo dysautonomia panel. I want to cry - I'm running out of ideas. At the same time, I don't know how to stop searching and just accept this. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted November 7, 2011 Report Share Posted November 7, 2011 I totally understand, empathize, etc. with you! I just cannot sit back and think I'll have to live the rest of my life like this. Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 7, 2011 Report Share Posted November 7, 2011 Hi Naomi,I'm so sorry to hear about the let down. Every time I go for any sort of test, I get my hopes up and I have continually been disappointed. Its really just ***** every time. I can never decide whether to be sad or angry. But, I don't think you should stop searching if you think something is wrong. I've been tested once or twice a year for thyroid issues since all of this started and because both my grandmother, mother, and older sister all have had thyroid issues. I've also been tested for autoimmune stuff since I was a kid to no result. Low and behold, I got the results of bloodwork from last week on Friday and they not only showed seriously elevated T3 but a few other non-thyroid related issues. A total fluke! The first set of blookwork from last week came back with nothing wrong as normal and I was totally ready to be disappointed again, but, then it happened! It was like a present! I just keep telling myself that autoimmune issues (which I totally believe I have) can test negative for years before you finally start getting labs that prove it. Go with your gut and know you always have allies here! Quote Link to comment Share on other sites More sharing options...
lgtaylor100 Posted November 7, 2011 Report Share Posted November 7, 2011 I agree with you Katybug. In an article that someone posted recently it said that there are no tests for 50% of the autoimmune antibodies.I still think my dysautonomia is autoimmune. Also I recently learned from the same article that a virus sets in motion all of the autoimmune stuff so it's not virus or autoimmune it could be virus and autoimmune.Naomi - I'm with you. I just got a bunch of lab results all negative including the anti-ro and anti- yo for parenoplastic causes. The only positive results were some small elevations in liver function likely due to all of the medications that I take for the dysautonomia.Lynne Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted November 8, 2011 Author Report Share Posted November 8, 2011 Thanks for the empathy and encouragement. I was so hoping this was it. I spent from August - November with this Dr., 2 trips into the city, calling his office, waiting for call backs, faxes back and forth, lots of lab visits (3 different labs), tons of blood tests, some repeat blood tests and the conclusion... nothing. AAHHH!!! I'm still leaning towards autoimmune too, Lynne and will see a Rheumotologist next (because I'm a glutton for punishment I guess). Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.