Gingergrrl
Senior Member
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I believed for three years (as did my doctors) that ME/CFS was my diagnosis and would have sworn on a bible (at that time). I no longer believe it to be correct, even though I was severely ill and share many symptoms with ME/CFS. My doctor did blood tests in 2014 and I matched with his other patients on what he considered to be the closest things to a bio-marker (at that time): very low NK cell functioning, extremely high IgM EBV titers, and non-existent vasopressin.
In spite of that, my symptoms kept going in a different direction and I did not have major fatigue, PEM, cognitive symptoms, or flu-like symptoms. I did have severe muscle weakness, breathing weakness/shortness of breath and restrictive pulmonary functioning on tests, confirmed POTS and severe Dysautonomia, and later developed MCAS. My diagnoses at this time are: Hashimoto's (autoimmune thyroiditis), Autoimmune POTS, MCAS (in remission) and B-Cell Driven Autoimmunity with a bunch of autoantibodies that do not fully match with any disease but match partial criteria for LEMS and a few other illnesses.
I am greatly improving with treatment, which is the most important thing, but I have to admit that there are days it kills me not to have an official "label". We know it is autoimmune (my case- not everyone!) which has been very helpful in guiding my treatment vs. initially I was trying a series of random things that either had no effect or made me worse.
In spite of that, my symptoms kept going in a different direction and I did not have major fatigue, PEM, cognitive symptoms, or flu-like symptoms. I did have severe muscle weakness, breathing weakness/shortness of breath and restrictive pulmonary functioning on tests, confirmed POTS and severe Dysautonomia, and later developed MCAS. My diagnoses at this time are: Hashimoto's (autoimmune thyroiditis), Autoimmune POTS, MCAS (in remission) and B-Cell Driven Autoimmunity with a bunch of autoantibodies that do not fully match with any disease but match partial criteria for LEMS and a few other illnesses.
I am greatly improving with treatment, which is the most important thing, but I have to admit that there are days it kills me not to have an official "label". We know it is autoimmune (my case- not everyone!) which has been very helpful in guiding my treatment vs. initially I was trying a series of random things that either had no effect or made me worse.