Anyone with a shakey hand??? - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Anyone with a shakey hand???

Debbweb01 profile image
9 Replies

I'll try to make this short! Lol... Today my left hand started to shake! It feels like it's not yhere!!! It's a bit like a tremor! Can't seem to stop tho? I'm not ANTICOAGULATED and have had a headache for Atleast 4 weeks! Im so damn tired I don't no what to do anymore! Accept take a nice trip to England!!! Lol... It has happened b4, but usually just my left pinky! Thx in advance!

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Debbweb01 profile image
Debbweb01
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9 Replies
Ozchick profile image
Ozchick

Sorry, can't help you but sympathise for the bad spell you're having.  Are you at least having some aspirin?

UKWendy profile image
UKWendy

Yes. This is one of the symptoms I had before being hospitalized for 5 weeks with 8 pulmonary embolisms. My GP sent me for cranial MRI and saw nothing then 6 months later I got the PE's. Please have your initial APS assessment done by a local specialist. Good luck. Xx

jjandsj profile image
jjandsj

My Granddaughter has this all the time, not only her hands but her legs too, she has APS, Lupus and Fibromyalgia, she has had strokes and TIA's, certainly keep your Doctors more informed and badger them to get you on the right meds...

pauline19 profile image
pauline19

I had sudden onset hand tremors begin several years ago. In me its a manifestation of Parkinson's but my cardiologist had seen it in another patient, and took me off the beta blocker metaprolol, and substituted propranolol. Tremors STOPPED! I can't recall what the drug mechanism was, but know that propranolol is often used for "focal dystonia." It's so odd, but worked. Other MDs were saying, "okay, you REALLY need a psychiatrist now. This HAS TO BE CONVERSION DISORDER." My cardiologist who's known me for years said "nonsense." He asked me if it started or worsening when I was fatigued? Of course it was happening or worsening when I was tired. Eventually I discovered Aflatoxin B-1 producing mold in my house and after that was taken care of, it mostly went away. So you might do some sleuthing, you might find a neurotoxin in your environment. My nephew developed a similar tremor and figured out it was caused by DRYER SHEETS! (Yes--those waxy things you toss in your clothes dryer are loaded with carcinogens!). Look around, because we often assume WE are the problem, when it's really an allergic-type NEUROLOGICAL reaction from something EXTERNAL!

loppylou68 profile image
loppylou68

Tremor was one of my initial symptoms. I was diagnosed with dystonia and Chorea long before Antiphospholipid lipid diagnoses. Good luck 🍀 

jetjetjet profile image
jetjetjet

 I have 2 types of tumors and very intense Muscle spasms  i get shots ebry month and dry needles from bottom of skull down to very lower back once a week and then stretching once a week when it gets so bad  that i have to go into therapy{ about every 2 months } I am on some pain killers and 2 types of muscle relaxers every day  and a large amount of Gabapentin . 

 But even with all this  it still gets so bad I can actually see the muscles in my legs just go crazy  !! They twitch  and expand and contract at a very rapid pace - It can be seen even if i have winter lined jeans on , i have had total strangers see it and the look on their faces is    [[  WOW am I seeing this !! ]]

    

Dawn22 profile image
Dawn22

Yes. I started to get a strong shake in my left arm that progressed to also feeling very weak. I thought I had just pinched a nerve or something and that it would get better.  About 6 weeks after it began, i had a right thalamic stroke. 

It was my first big warning sign, and I regret ignoring it.

Debbweb01 profile image
Debbweb01

Awe I'm sooty you all have these tremors and muscle spasms! I too have in my right leg terrible muscle spasms! Extremely painful and seen in hospital with little blue spots running up my leg like something inside crawling up my leg! Muscle relaxers are only thing that works! Can't take GABAPENIN, as I have high sensitivity to it! I'm not stable yet with INR! It was 1.2 last time! I get very foggy and talk stupidly without making much sense! I'm a bit better now as my warrafin has been raised! Thank you all for your responses, they're greatly appreciated! I wish you all the best of health and to be happy no matter what we go thru, we must stick together and keep on truckin'! Lol...God Bless you all and keep you safe from this dreadful disease!!!

Debbweb01 profile image
Debbweb01

Hi yes same here! I drop everything! It's mostly my left hand but noticed when holding cell phone I shake with rt. Hand too! Do u think it's part of APS or some other ailment? I'm so sik of the new things! My sis DX'd with it about six weeks ago & she has thyroid and leg pain and found out she head neuropathy in her legs! So she too is progressing and dice she has no evidence of blood clots they're not putting her on any anticoagulants! I think she needs to be on Plaviix??? Especially now she has neuropathy??? They said she has Familial APS! So I'm younger, but must be because of me! My doc said not very inheritable! Bull it is I've seen what Dr. Hughes just wrote! No one knows nothing! I'm going to save my pennies and come to England ! I'm so fed up with USA Docs! I'm trying one more Rheumy and that's it I don't even care no more! I know I have Carole tunnels syndrome!  Ok enuf of me how r u my dear! I c u all the time on here! You're very kind to answer me! I'm just confused and pain in rt. Leg again and swollen ankle! I just don't want to loose my right leg like I lost my left leg to this dreadful disease and being under a Hemotologist care for 13 years going unnoticed! I have PVPolycythemia Vera too called sludgy blood! Very rare! Only 60,000 people have it and mostly men in sixties! I diagnosed myself and then found a Hemotologist and point blank asked him and he was shocked I even heard of it!!! Yes I had it! How cud I be under his care for 13,years and APS go undiagnosed??? I was in my 49's wen I got it early 40's! I hope u r doing well and on right track with it all! Godspeed!!!

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