Clairefmartin Posted June 27, 2012 Report Share Posted June 27, 2012 I FINALLY recovered my log in and password! My old laptop had died, and all my saved info along with it. Just wanted to say hello, and up date you all quickly.I'm still working towards a more concrete DX/cause of my POTS, but Dr. Chemail is pretty positive I have Autonomic Neuropathy, definitely POTS (duh), transient OH, and something autoimmune causing the neuropathy. He thinks Sjogrens is most likely. I also am looking at MCAD, still having random crazy reactions to things, but that could be autoimmune (or both). My Mom's doctor out of the blue told her she needs to be tested for Sjogrens (I've been telling her for years!), and my aunt is on her way to see the MCAD specailists in Boston. So either or both may be a possibility. My lip biopsy is in a few weeks, and the small fiber neuropathy biopsies are end of July. Then all the autonomic test equipment arrives and I'm slated for everything in the early fall .I hope everyone is ok, and have missed being on here! I have tried to log in so many times its rediculous, was stuck on my phone for a while, then even with a new laptop was unable. Glad to be back.Claire Quote Link to comment Share on other sites More sharing options...
bellgirl Posted June 27, 2012 Report Share Posted June 27, 2012 I had blood work for Sjogrens that was negative...Is it only a lip biopsy that definitively gives you a proper diagnosis? Glad you are getting some answers and are scheduled for more testing. How do they test for small fiber neuropathy...take nerve samples? I had a nerve growth on the end of my nose that was biopsied, and when I asked my neurologist why I had nerves growing on the outside of my body, he just shrugged, so now I'm curious... Quote Link to comment Share on other sites More sharing options...
arizona girl Posted June 28, 2012 Report Share Posted June 28, 2012 Hey claire, good luck with the testing. I had both kinds of biopsies. SFN biopsy was positive for autonomic neuro and mine is autoimmune. My testing for sjogrens even though I have all the sicca symptoms was not positive. My biopsy showed infilitrates but not high enough to diagnosis sjogrens. While that lip biopsy is the gold standard right now. I discussed this with my doctor who is treating my lichen planus who also said that and the hashimoto thyroid were connected, both autoimmune. Anyway my discussion with him was that according to the research by the time the lip biopsy shows positive you have probably had the disease for a long time. It is usually the last thing to show the disease is active and I did have a positive ssa and ana, and that still wasn't enought for one rhuemy I saw. My patient advocate had me see a different rheumy who is out of mayo and standford and she diagnosed UCTD.I also had another positive autoimmune markers an sm/rnp, as well as a scalp liasion biopsy that pointed to lupus. Not enough to diagnosis any of those specific diseases. But enough to show there is autoimmunity and connective tissue disease. From those findings my rheumy diagnosed Undefined connective tissue disease and I am now on plaquinel, with the option of methotrexate, if that doesn't work. I also have a primary immune defect called CVID, that and these autoimmune diseases tend to cluster together. So you might want to mention UCTD if you don't fit into a specific autoimmune disease. It is a legit diagnostic code that allows treatment.My treatment for the sfn and CVID was first plasmapheresis and when I showed benefit from that it was switched to IVIG. That alone though was not effective enough to treat the lichen or hashimoto or the metabolic/PCOS syndrome. Those treatments now include synthroid, plaquenil, glumetza, steriod suppositories, labetalol, vitamin d, b12 and some pain and muscle relaxers. I've been on the first three mentioned about four months now and I feel like I have stabilized and hopefully am starting to improve. So, wanted to give you some hope that there can be treatments depending on the doc you see. I hope in a year to have even better improvements to report. This is the first time in many years I feel like I have finally turned the corner and am not continuing to slide backwards. For a while i was like how many autoimmune disease can one person have, it was ridiculous! Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted June 30, 2012 Author Report Share Posted June 30, 2012 Thank you Arizona Girl - that is a lot for anyone to deal with! I hear this from lots of people with AI issues, they tend to cluster, and cross over, and change over time. I'm completely antibody negative, the only thing that shows up for me is high IgE and IgG, and mildly high C1. I have been reading up on CVID, have not heard of UCTD, but will look it up. Thanks again - and I'm glad you found treatments that help! I know quite a few people with AI/POTS and with IVIG their POTS symptoms all but dissapear. I'm hoping something shows up that can be treated with it, because it seems to work so well for so many. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted June 30, 2012 Report Share Posted June 30, 2012 Since you mention you have high igg and ige. You might want to investigate the other primary immune diseases. primaryimmune.org is a good place to start, google that with high igg and ige. There are immune disease that present as hyper and not hypo like mine did. My igg was really low and my igm was zero. I was also told I had fibro like you, it turn out to be symptoms of the autoimmune/immune defect. Just looking at the fact you have raynauds, gi issues and factor 5 leden (blood disorder?) they all point to something off with the immune system.Take care and keep on keeping on, you will figure it out! Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted July 13, 2012 Author Report Share Posted July 13, 2012 Thank you Arizona Girl! I am just seeing this. I will look it up for sure! Quote Link to comment Share on other sites More sharing options...
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