Is Anyone Diagnosed With Sarcoidosis?

[Lethargic Smiles]

I did some searching and couldn't see a thread on a sarcoidosis. Does anyone have this diagnosis? I think neurosarcoidosis would make sense in some POTS cases.

[bellgirl]

Check Dysautonomia International. They have a whole write up on it. It's a relatively new site. It gives diagnoses as reasons that patients might have POTS.

[arizona girl]

Yes, I don't know how common it is but it does cause dysautonomia symptoms. My neurologist actually did a blood test on me for it, along with a bunch of other rarer causes. Thankfully it and carcinoid came back normal. My skin biopsy for small fiber though came back abnormal and I was diagnosed with idiopathic polyneuropathy. Was treated with plasmapheresis and had improvement, then got an infection and anemia. At that point my immune system was tested and I had hypogamma and then qualified for ivig. BTW I never ran proper fevers even when it was obvious I was sick. So, my infections were going untreated.

Like an onion the layers kept coming off and we soon discovered I had several companion autoimmune diseases that like to party with hypogamma. Hashimoto, uctd and lichen. I also have pcos and metabolic syndrome. My 3 different skin biopsies for the sfn, uctd and lichen proved more diagnostic then my blood work. Often antibodies don't always show up when you have hypogamma. I had obvious symptoms of thyroid and uctd for years before blood work finally showed elevated antibodies. It took forever to get diagnosed.

So all that to say it can't hurt to rule things out. The doctor that diagnosed me specializes in autoimmune neuromuscular disease, which is a small sub specialty of neurology. When I first saw him, he said to me "There are endless causes for pots, lets rule out what we can."

[Lethargic Smiles]

Thanks for the tips! I may be on to something based on a Gallium Scan I just had done.... I will update when I know more!