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Lupus Testing Round 2


lissy
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Hello All,

Been alittle while since posting, been doing alot better since hysterectomy back in March:) But a few weeks after I developed random sporadic joint pains and the fatigue thats been going strong for almost 5 years now....

About 4 1/2 years ago I tested positive for the lupus anticoagulant (at my sickest point) but at the repeat it was negative so I left that avenue alone. But when I had a follow-up after surgery my doctor suggested doing back to the rheumy to get re-evaluated so I have about 10 blood tests to take tomorrow.

A abscessed tooth removed Tuesday.

And a sleep study Friday.

Busy scary week for me:( But hopefully some answers.

Is there any information linking Lupus to POTS directly? Or are they pretty much 2 separate issues?

Thanks, Lissy

Hope everyones managing well:)

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Hi lissy, I went through the same kind of testing have had a lot of lupus, sjogrens and thyroid type symptoms. Though I did have positive ana's, ssa, sm/rnp and a scalp lesion that pointed to lupus it was not enough to define any of them, though it appears I am heading in that direction. When you have mixed results or not enough positives, there is another diagnostic code they can use, which you might bring to your doctor's attention.

It is called UCTD or undeferentiated/undefined connective tissue disease. The good news is they treat it the same way they would any of the other autoimmune rheumatic disease. Also there are other autoimmune disease that fall outside of rheumatology, depending on your set of symptoms you might look into those if this dosen't pan out. I have it as well as hashimoto and a primary immune deficiency called cvid which causes a lot of infections. I grew up having all my teeth abscessing. These type of autoimmune disease are often found when along with cvid.

All autoimmune disease can cause autonomic dysfunction if they attack your small fiber nerves. This is called autoimmune autonomic small fiber neuropathy and is diagnosed by skin biopsy and qsart. It is very common in diabetes which also is consider autoimmune, but they are finding many other conditions can cause these nerves to be damaged. Good luck and I pray they get to the bottom of this so you can get to treatment. Take care!

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Lissy, a positive lupus anticoagulant occurs in antiphospholipid (Hughes) syndrome (APS). This can occur in association with lupus (ie secondary APS) or independent of lupus, ie Primary APS. I have dysautonomia and Professor Hughes (who described APS and for whom the syndrome is named) believes the autonomic trouble in my case is due to APS (although this association has not been published yet).

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Thanks for replies, had tooth out yesterday still recovering!!!! Didn't get blood tests Monday thought it would be to much to go through, so I will take on that probably next Monday. I can't believe I finally got this nasty tooth out I delayed it for 4 years I was so terrified of the local ( the medication phobia) but I feel so proud I will overcome these fears!

Keep yall posted on the sleep test, and blood work:) I will look into everything you gals have mentioned;)

Have a good day

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