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Sjorgens Anyone?


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My good POTS buddy who is not on this forum has rare Sjogrens with neuropathy that causes her POTS. All her blood work tests came back negative, until she finally had a salivary biopsy. I'm getting the same done (starting with blood work) to rule it out. I'm on a facebook group for people with POTS and Sjogrens that she started - gathering info as I'm exploring autoimmune causes for my POTS. PM me if you want info :)

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Claire - keep us posted on what happens with this? I went down the same road - when blood was negative, I went for the lip biopsy, but that was negative too. I'd be curious to know what your outcome is.

Will do Naomi, I'm out of other "cause" options, something is wrong with my leg to cause the massive pooling on one side only. I think its a neurapathy of some kind, maybe - I always think I know what could be an answer and then I get none.

Thanks.

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Claire - keep us posted on what happens with this? I went down the same road - when blood was negative, I went for the lip biopsy, but that was negative too. I'd be curious to know what your outcome is.

Will do Naomi, I'm out of other "cause" options, something is wrong with my leg to cause the massive pooling on one side only. I think its a neurapathy of some kind, maybe - I always think I know what could be an answer and then I get none.

Thanks.

Wondering if you have developed lymphedema because of your surgery. I know you're not being able to walk a whole lot, but maybe you could get physical therapist to massage it for you and try to get the blood flow better in that leg. , I know surgeries can cause issues with those type things.

Issie

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Rama, you can email POTSGrrl through her blog, she can connect you, and she has both. I can connect you via facebook if you are on there, I know a few folks besides her as well.

And no, she is not on Dinet Potluck, I have tried :)

She and I work together on awareness stuff, she's very knowlegable.

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Mine was an informal diagnois. No tests confirming or disproving.

It was diagnosed with I was diagnosed with ME/CFIDS and had minor OI at that time. Well, I thought it was minor but looking back, it wasn't minor at all. I just attributed the symptoms to ME/CFIDS.

The Sjogrens' doesn't seem to have progressed much, thankfully.

Several autoimmune issues going on.

Marti

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