Square 1
I went for my follow up with my new rheumatologist. She had told me after the first visit to consult with a Columbia neurologist who specializes in small fiber neuropathy. This new neurologist took my files, read through everything and determined matter of factly that I definitely have Ehlers danlos syndrome and autoimmune disease on top of it. The rheumatologist can't say she agrees that my full body neuropathy is for certain Ehlers danlos syndrome and also she isn't even 100% sure if it is autoimmune despite circulating antibodies. So I'm left at.... idiopathic as far as her opinion is concerned. She also said that I have enthesitis after feeling around my joints. What a day.


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Gads, I'm so sorry to hear this, HG. Square 1 is a very crowded place.



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Sorry to hear this. It gets very frustrating.

thanks, it sure does. Considering that I seem to have stabilized and haven't given up hope for healing, I am not as frustrated as I once was. The enthesitis has become worse, but I am allowing myself to believe that with the amount of damage my body endured due to "what ever", that it is trying to heal.

Bummer. But it makes some sense I guess. Most of the people that I know with EDS didn't have awful full body, acute, life-altering presentation of this gawd awful condition.

And the more I learn about mold, it really seems like we don't even fully understand how it triggers significant illnesses. And there is not much when you search ncbi either.

There was an interesting dude on the Robb Wolf podcast this week. He was doing research for his Ph.D. and was living in a hut in the jungle, which was full of black mold. And it wrecked his life and his health.

Robb Wolf - Episode 366 - Ryan Frisinger - Health Restoration, Genetics, and Methylation

Healthgirl,

In the category of "for what it's worth"....

Hyper Joint Mobility, EDS, Collagen, Histamine & CIRS: Implications

Hyper Joint Mobility, EDS, Collagen, Histamine & CIRS: Implications - Metabolic Healing

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I've been in it for so long. It was interesting to be out of it for a few months with the diagnoses and causes the other doctor was so sure of. This was another opinion, so while I agree that they are both "right" in a sense, I'm still left with trying to find the cause of what threw this into such an acute situation, and why it happened to three of us. This doctor did mention exposures do damage the nervous system, so it just all goes back to the renovation we lived through with sheetrock dust, mold, and bad air quality possibility.