I'm Elaine, from Sydney, Australia. I've been insidiously and progressively ill for many years but only heard of SPS for the first time a few weeks ago when I tested positive to a GAD65 test. I can't tell you a number because the report just lists as Detected or Not Detected.
The neurologist repeated the blood test and I don't have the second result back yet. The lab ran the wrong test ... GAD instead of GAD65. I'm negative to GAD but positive to GAD65 and haven't a clue whether that means that SPS is not so likely for me.
I do have muscle issues. My thighs, calves and gluteus muscles are very hard and painful. One calve keeps doing these funny contractions or outright cramps. My lower spine is increasingly stiff, and my facial muscles are involved. Who needs botox when nature delivers immobility. I've lost a few fine lines! I frequently can't talk or talk properly because I don't have enough movement, which also frequently affects my ability to smile, laugh and cough. Yes, some dramatic choking episodes along the way.
I'm also positive to Borrelia but don't know if that's a true-positive and infection has somehow caused this, or the other way around and a false-positive somehow induced by immune issues.
I have mildly elevated ACE which probably comes from diaphragm restriction and get very elevated calcitriol at times (with this combination making Sarcoidosis seem likely for a while).
I'm P-ANCA positive, too, these days but don't know if I have a mild vasculitis or if that means something or nothing.
I burn at times, head to toe, and have painful arthralgia ... don't know if that can fit into SPS or is Borrelia, ANCA-related or something else.
I have thyroid issues but more of a sick thyroid thing than autoimmune. I don't convert well to T3.
These recent blood tests also showed I have low serum protein and low gamma globulin. Don't know where that fits in.
So, I've written an essay as 'Hi'. Just floating here, trying to learn, while it's figured out whether I'm one of you or not.