Quote:
Originally Posted by Pyr2
Heb
Thank you SO much for responding. So you have APS and mainly neuro symptoms with no other diagnosed autoimmune disease? Are you ANA positive? Let me ask you this about APS. Did you have any miscarriage, thrombotic events? Also- what do you know about levels? In 2003 time frame I had two miscarriages around 11 weeks and for about 2 years my levels were in the 44-70 range. I had zero neuro symptoms at the time. I was tested a scattering of times in the next 10 years after that and the levels were always lower, 22, 13, 14, and even negative. If you test me today when my worst symptoms are, I am positive but barely. Do actual levels matter as to symptom severity? I have also heard that levels can be in response to a viral infection but Im not sure if that can persist (over 13 years for me) that long????
I am always freaked that this is something new thats developed in the past three years and then I need to ground myself that this has been lurking forever. I guess when antibodies hang around the brain that long its not good. I see all the way back in my medical records to 1997 that I complained of facial burning sensations, eye burning, joint and muscle pain, hot and cold limbs, and had several EMGs. Even though it disappeared for years at a time I have to imagine it was the start of something neuro. Im betting its infectious for me too and that all this autoimmune stuff is from that b/c although I have very low serum complements (c1q, c3,c4) I don't exactly fit the bill for classic lupus symptoms. These multiple cranial neuralgias though are pretty classic autoimmune.
Besides pain meds, are you on anything for the APS or your neuropathy- meaning any therapeautic treatment?
And I know you probably posted it on here before, but catch up with me - I imagine you are female - how old? kids? etc.
NIce to meet you under these horrible conditions~ Try and enjoy your long weekend!
L
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Hi Pyr2... To answer some of your questions, I have extremely high beta 2 glycoprotein, one of the APS antibodies, and only mildly elevated cardiolopin antibodies. The reference range is 0-20 and my blood work has been as high as 117. I've never had a miscarriage but also have a history of severe endometriosis, and I never tried to get pregnant. I have two beautiful girls I adopted. I've never had a stroke or thrombic event. That being said, I feel like a sitting duck with such a high beta 2 number. I have chronic nerve pain that never waxes or wains and terrible joint pain everywhere, especially my feet, hands and knees. That aspect of things is more typical of the parvo virus persistence, especially found in middle aged women. I take 1800 mg of gabapentin and 10 mg of nortriptyline (baby dose) and Ambien to help me sleep through it all at night. The doctors feel I have a fibromyalgia "like" dx but I don't have the typical tender spots, so they have labeled it a central sensitization syndrome. My skin is ultra sensitive, at times so much so that even hair touching my neck hurts. My feet burn like their in acid sometimes. I think the weather and season changes affect things greatly, but I can't pinpoint the exact mechanism of it all. I HATE the vibrating sensation I feel almost non-stop. It's the very first thing I feel upon waking in the morning. I feel like I've been robbed of life by a ghost and hate the word idiopathic. I manage to smile still though