First of all thanks for the warm welcome, and for your willingness to share your experiences. I've been reading alot and it feels like I'm among old friends... .
Nine years ago suffered what seemed like 2 or 3 strokes, dx APLS, Protein C & S deficiencies, Fibromyalgia, CFS...long history of blood clotting, period problems, m/c, d&c's. Saw the "best" and came away feeling like I was trying to crash a party with a clique who didn't want me in the group.
Pulled up my bootstraps and kept swinging away.
Started having migraines, sometimes for 48 hours, bad headaches - different origins - eyes, neck, back of head, top of head, lots of pressure.... all tests normal. Weird "flare" activity - unexplained fevers would come and go every few hours, visual disturbances, horrible concentration, no longer able to multi-task, nasal ulcers, mouth ulcer, brace yourself - vaginal ulcers. Neuro cognitive testing showed delay in processing speed and decreased strength on right side when performing tasks.
Radical hysterectomy last year to resolve major pain with the return of my period after 2 uterine ablations.
Recently had a UTI (no elevation of WBC?) and that's what seems to have kicked off this downward spiral.
Started having some twitching in the left side of my face, a little bit at the outter part of the eye, then 1/2 way between the apple of my cheek and the bridge of my nose, next a little on the corner of my mouth and then lots of crazy activity on the face, down and over a bit, towards the ear. Start having back spasms (new to me) that keep me from moving, and really bad stiffness at the side of my neck (aches). Dizziness started 13 days ago, not vertigo, something more like wacky eyes and balance. By the 3rd day, I had my husband take me to my PCP and on the way to the car started noticing that my left foot felt weird, couldn't quite feel it connect with the shoe, from what I've read it sounds like classic "drop foot". In the car started with numbness and tingling in my arm and leg- all left sided - and then the facial tingling started. It stayed on the left, I could feel it come across my lips and halt at the center. Then had that glorious "eletrical" tingling that comes up the back of the neck and covers ever inch of the scalp like a hat. THIS IS EXACTLY WHAT I WENT THROUGH BEFORE!!
Interesting new vision issues - eyes darting, seeing things?
There's more, but this is the most coherent I've been in over a week and I have an echocardiagram scheduled in 5 hours and a visit with a NEW neuro after that.
Oops, forgot to mention that I had a BAER and an ENG which ruled out movement disorders (vestibular).
I just pray that I am able to come off at least slightly intelligent with the new Doc or it'll be back to the beginning for me. I'll get a bit of shuteye and post an update tomorrow.
Not many here are very familiar with antiphospholipid syndrome, at least we don't see it discussed much on the forum. I do hope Quix, our resident expert on things medical, will weigh in with her usual great explanations.
For me, I just know that it's an autoimmune thing, also known as Hughes syndrome, and involves abnormal blood clotting, often affecting pregnancy. It is considered an MS mimic. I don't know if the earlier symptoms you describe are part of that, but they're not seen in MS. By that I mean ulcers, and odd fevers. Is there medication for this condition, and do you feel that your APLS is under control?
Twitching of tiny muscles is rather common, and does not necessarily indicate MS, though it can of course be maddening. The other symptoms you describe are pretty familiar here. However, most of them are non-specific for MS. I hope you get a thorough neuro eval, with blood work to rule out a lot of diseases that can present the way you describe.
If you haven't managed to sleep since your post, spend some time writing a timeline of all your symptoms--when they came and when they went. Particularly since your situation is so complicated, this could help the neuro figure out what's going on with you.
Sending good wishes that you get to the bottom of things soon. Please let us know about your doctor visits.
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