Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Dysautonomia? A recommended abstract to show your doctor for those looking for the cause if it...

Discussion in 'Other Health News and Research' started by TrixieStix, May 15, 2017.

  1. TrixieStix

    TrixieStix Senior Member

    Messages:
    444
    Likes:
    703
    From "Dysautonomia International":

    This is an important abstract to share with your doctors if you are still looking for the "cause" of your dysautonomia. Ask your doctor to pull the full article. Researchers screened 195 patients with idiopathic small fiber neuropathy (SFN) for various blood tests that are used to help determine the cause of the SFN. 87% of these patients had some form of dysautonomia. 71% of patients had at least one abnormal blood test in a panel of 21 widely available tests used to screen for known causes of SFN (see the list in the comments below). The blood tests that were more likely to be positive in this population than in the general population were autoimmune related - thyroid stimulating hormone (TSH - too high and too low), Sjogren's (SS-A, SS-B), Celiac (IgA TTG), low complement C3 (associated with vasculitis and autoimmunity in general), high ESR, and high ANA (1:160 or more).

    [​IMG]
    Diagnostic value of blood tests for occult causes of initially idiopathic small-fiber polyneuropathy. - PubMed - NCBI

    https://www.ncbi.nlm.nih.gov/pubmed/27730378
     
  2. TrixieStix

    TrixieStix Senior Member

    Messages:
    444
    Likes:
    703
    In my case it rheumatologists had run all those tests except "Complement C3". Of those only my "Rheumatoid Factor" had come back abnormal. It was only recently that my ME/CFS specialist had my "Complement C3" (along with C4 & CH50) tested (*this is not the same test as C3a) and it came back extremely low. The test has since been repeated and it came back just as low. This is not normal and not associated with ME/CFS. This has caused me to re-evaluate my "Fibromyalgia" diagnosis 2 rheumatologists have given me. I may have Fibro, but it isn't the whole answer that's for sure!

    I've been experiencing severe neuropathic pain in my feet for 6 years, 3 few years ago I developed dysautonomia and considerable loss of sensation in my left foot/leg, a year ago I developed neuropathy symptoms in my face, and most recently I've begun to experience serious dry mouth. Not once has a doctor (I've seen a lot of them in past 3 years) suggested I have a skin punch biopsy done to look for evidence of Small Fiber Neuropathy (SFN) !!!! I consider this malpractice as current guidelines for diagnosing Fibromyalgia state that skin punch biopsy should be done to rule SFN in/out given recent studies have shown that up to 50% of ppl diagnosed with Fibromyalgia have SFN of which a cause can often be identified and treated.

    My priority is to get my primary doctor to do a small punch biopsy very soon. I will be shocked if it comes back normal.

    The most recent rheumatologist didn't know what to make of my very low Complement C3, and when I asked about Sjogren's given that some months ago I had onset of constant dry mouth that is bad enough it is affecting my sleep she commented that if it was Sjogren's the dry mouth wouldn't have started so long after the onset of neurological symptoms. She ran the 2 basic Sjogren's tests and they came back negative.

    However I am now reading medical journal info about Sjogren's and it says that the neurological symptoms can start before dry mouth and/or eyes begins. Also positive Rheumatoid Factor and low Complement C3 are very much associated with the disease. And actually people with Sjogren's who have hypocomplementemia experience an even higher rate of Lymphoma, more severe disease, and earlier death. Sjogren's could potentially explain sooooooo many of my symptoms and what I have gone through in recent years. So far it's the only condition that potentially could explain ALL my symptoms. How can I not make sure it's really examined closely as a possibility! I'm not self-diagnosing myself, and I may not have Sjogren's, or perhaps I have it in addition to ME/CFS, but I definitely do not believe due diligence has been done by my doctors thus far in looking at it as a possibility.

    Sjogren's is also known to be a cause of low Natural Killer Cell Function which I do have. It can also cause severe fatigue similar to that experienced by those with ME/CFS.

    http://info.sjogrens.org/conquering-sjogrens/bid/342548/13-Types-of-Sjogren-s-Fatigue

    (SS & NK Cell Function) http://onlinelibrary.wiley.com/doi/10.1002/art.1780260803/pdf

    https://www.hopkinssjogrens.org/disease-information/sjogrens-syndrome/neurologic-complications/

    https://www.hindawi.com/journals/ad/2012/645967/

    http://repositorio.chporto.pt/bitstream/10400.16/1604/1/Neurological involvement in Primary Sjögren’s Syndrome.pdf

    https://academic.oup.com/rheumatolo...pocomplementaemia-as-an-immunological-marker-

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3602968/
     
    Last edited: May 15, 2017
    PatJ and Izola like this.

See more popular forum discussions.

Share This Page