Does anyone else struggle with seizure "like" activity, as my docs call it, or nervous system stuff like shaking & stuttering or intentional tremors? I had all of the above to the point of being completely home bound for six years, then switched to whole grains plant based diet and stable blood thinning. The shaking and tremors disappeared and the seizures went from daily to rarely.
Eight years later, all is back and don't know why. I just ordered my own INR monitor so I can self test, it should be here some time next week. I did have unusually high household stress for about nine months and believe it was definitely a catalyst backwards as symptoms started returning towards the end of it and have continued downward .... just haven't been able to 'get hold of the reigns' again since then.
Diagnosed with APS at 38, rheumatologist said it devolved at age 22 according to my pregnancies history, and I'm now 52. Wondering if my body has just had enough and is saying this is my new norm........man I hope not....🤦🏻♀️
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Mancoca
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I see you live in the US where the Reumatologists specialized in autoimmun illnesses are not to be picked on trees.
Hope you have got one who understands now when you are going to selftest (great!) that you need to doubletest in the vein for some time (severla months) to see if there is the same difference between the two readings in finger and machine.
I do not know if you are Lupus Anticoagulant then it is extra important to be careful.
Those symptoms you talk of have they returned when your INR has been low and unsteady perhaps? Prof Hughes talkes about an INR over 3.5 and up to 4 or sometimes more to get rid of the small "events". Hope you have a really good Doctor and ask him to take all bloods that may be necessary (vit D, Ferritin, B12, a whole Thyroidea-panel etc) to feel better.
Hi there, do you have a specialist looking after you who fully understands Hughes Syndrome/APS for instance understanding that perhaps your INR target may need to be higher, plus all the other tests we recommend such as vitamin D, B12, Iron and Thyroid. Let us know where you are located.
Thank you so much for your replies Kerstin & Mary, as I have felt so alone with this. I am in Colorado Springs, Colorado, USA.
No, I have ZERO medical support. The rheumatologist that diagnosed me 14 years ago said he was not qualified to treat me, referred me to neurology and has since retired. Every neurologist since refused to acknowledge the APS. The last one available on my pathetic insurance said my week long brain scans showed I was not epileptic and that my scans were abnormal when I was fine and normal when having seizures (just the opposite of what was expected). He'd never seen such a thing, put me on seizure meds (6 pills daily) saying he knew they wouldn't help but they couldn't explain what was happening so take them anyway. Then refused to treat me further unless I went to a HYPNOTIST he wanted me to see! What! I thought he was kidding... he wasn't....
Having exhausted the docs on my insurance that left me on my own.
So I've had to do all possible to research and thin my blood thru essential oils, diet & supplements & without any INR checks....talk about Russian roulette ....
I got too thin once, bleeding thru the top of my scalp, but have done well for the most part until lately.
Finally, over 10 years later, able to go to a new dr. Dec. 29, 2016; she refused to check my Vit D, & others. I do take 5000 IU daily of D3, 100 mcg B12 and others.
Alkaline Phosphatase, S is high which suggests my liver is not happy. If dr. finally agrees at some point to help thin my blood, which I need, an already unhappy liver is a concern?
Oh my, I just rechecked my test results, I feel like such a dummy, thought it was low at 2.5 but INR was REALLY low at 1! No wonder I'm struggling!
I've greatly stepped up my routine...I'll do even more now. Goal is minimum 3.5 after your advice. So maybe tremors & seizures will stop. Hopeful.
Dr. wouldn't let me retest for three months, even with seeing me have two seizures during the visit, lose my speech and the right side of my face drawing downward! Her only concern was whether or not I was driving, then ordered an MRI.
My plan is to do a self check right after the lab does the next blood draw.
I didn't know several checks over months are needed to ensure the home monitor is accurate. Thank you.
I will plead with the dr. my next visit to please do more frequent blood draws (so I can double test with my home monitor).
If anyone knows of an APS familiar dr. in my area it would be tremendously helpful.
You are in the perfect place to see Dr. Jill Schofield from IMMUNOE (I fly from WA State to see her!) Her wait list is relatively long, but she's one of the few doctors who understands APS. (She has collaborated with Prof. Hughes).
I just saw this, and saw you had read a previous post I had written sometime ago, so I really relate to what you are saying. Fortunately, it has only been that one seizure for me. Hope you can get into see the doctors that have been suggested to you in the not too distant future.
I think you should put up a new post here with a question.......... if there is a Doctor specialized in Autoimmun illnesses in Colorado Springs, Colorado and who knows Hughes Syndrome well.
You should have that Doctor! Hope there is one!
Also is it a lab you use which knows how to send the blood just taken in the vein, quickly for a result of INR? Hope you can have teststips enough as it can be difficult in the beginning.
Did they take the three antibodies when you were diagnosed as the Lupus Anticoagulant is not possible to take now as you have started Warfarin but the other two, Cardiolipinantibodies and Beta2Glycoprotein 1-antibodies are still possible to take. Also what type of symptoms besides "seizure like activity" have you had during the years? Have you (the Doctor) ever tried baby-Aspirin to begin with?
Do you know if you tested positive for Lupus Anticoagulant? Could be important to know.
Thanks for the doctor posting suggestion, I will definitely do this.
I know the dr. initially ran several tests but I don't know specifically which ones they were or the specific results. Older records are purged after seven years here by some doctors.
Health insurance determines the lab, whether they are competent or not.
Aspirin was not effective, blood still way too thick.
Symptoms over the years, too many to list, some are:
Weight loss, 5' 5" & 108 pounds, though I've found I feel better with lower BMI now.
Occasional Hair loss
Nail hemorrhage splinters
Unexplained Overly dense muscles, according to an ultrasound, technician said it was as if I extreme exercised, but my exercise bike is for hanging clothes on and the one dumbbell I own is used as a doorstop. 🤷🏻♀️ 😊 (Though I do know I need to be more active to help thin my blood.)
Yes you need to thin your blood and perhaps selftest, but first I think you should try to find a Doctor who knows everything about this illness.
He will take all the bloods that are required before you start selftesting. If it is possible look for the bloodtestresult you have had that tells you are positive to Hughes Syndrome and thus diagnosed. Especially if you are Lupus Anticoagulant positive as you can not test for it when on Coumadin. If you are LA positive it can be some trouble with selftesting. Important then to doubletest carefully.
It is relevant that you finally after at least 14 years get to a Doctor who is specialized in autoimmun illnesses. Hope you get someone who has read what prof Hughes says about INR around 4 and that we do not bleed but clot from this disease.
I hope our members will help you with a name. Look at "pinned post" and other info on this site also.
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