Update
 

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.

:grouphug:

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Sorry to hear this. It gets very frustrating.

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.

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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That was a good read janieg.

Health girl I am in the same boat as you. I've seen an EDS specialist. I have hypermobility but he is not calling it eds. I am on the periphery of eds he said, I basically need one more thing to go wrong and then it will be official or guess. I have all the signs including very stretchy skin, hyper flexible spine, legs, orthostatic intolerance, loads of digestion problems etc.

But, the guy I saw, who is well known and works in a specialist hypermobility unit believes all my neuropathies are not directly related to eds. He doesn't see people with EDS present like me. My sfn is head to toe also and horrific. It came on acutely after I had a child. He believes it is another issue in the context of hypermobility. I always felt this as I don't believe nerves just spontaneously combust in that fashion with a genetic defect you always had.

We talked about trying other types of immune suppression. He is writing to my neurologist as he has sadly highlighted the fact that my muscle wasting is bad and it is affecting all limbs.

Has no consultant ever suggested trying some sort of immune suppression?

All I have to say is darn it! Carol