I have aps and body tremour/ fitting?... - Hughes Syndrome A...

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I have aps and body tremour/ fitting? Does anyone else expereince this?

dulcie profile image
7 Replies

I have been diagnosied with lupus and aps. I have also had two body tremour on my right side, that looked to witness has a fit. Has anyone else had simiular and is anyone of medication to stop this?

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dulcie profile image
dulcie
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7 Replies
jetjetjet profile image
jetjetjet

i have 2 types of tremours going on, been seeing many specialists on this very thing -no answers yet , but will keep you up on any useful results !! ------------------------------------------ jet

dulcie profile image
dulcie in reply to jetjetjet

thankyou. I will also let u know if the specialists come up with anything.

daisyd profile image
daisyd

I have epilepsy, I think caused by Hughes syndrome are you aware of the shaking. I used to have small spells of being vacant not answering getting in the way, infact just standing still biting my lip.,

i usually got a headache afterwards I am now on antiepileptic medication and it has stopped, are you seeing someone for it,

Love Karen xx

WayneL profile image
WayneL

Hi, Dulcie.

My daughter has tremor episodes (not unlike Epilepsy) and when these occur, her legs give out and her whole body goes into rhythmic convulsions that might last anything up to a few minutes.

Afterwards, she is weak and wrung out, unable to even move for at least 20-30 minutes,then she recovers ok.

Her GP has prescribed a low dose Diazepam for it and up til fairly recently, it was doing the job.

Unfortunately, it seems that she is developing an immunity to her current dosage and as a result, is now not as effective as it once was.

We're going to see a specialist in Melbourne soon, and we're hoping to get some help on this there.

Will keep you in the loop,

Wayne L

lesleylaw profile image
lesleylaw

I have epilepsy, but that doesn't make me shake, l have a constant tremor which is really embarrassing, neurologists have called it a benign tremor, originally l was prescribed beta blockers for this,but have not been allowed to take them for years because of asthma. The most annoying thing is when perfect strangers say to me "stop shaking"

lesley xx

ECarter profile image
ECarter

Shake all the time, sometimes quite violently and they are getting steadily worse. Also moments when I momentarially lose control of my left side causing trips and falls that are very inconvenient. The tremors are exhausting and embarassing and the doc will only consider thyroid as a possible cause with no positive response despite 4 yrs of testing.

tiredmum profile image
tiredmum

Hi i used to have terrible tremors before i was diagnosed with APS. I was sent to a neuroligist who told me there was nothing wrong with me, however when i did have the shaking episodes i would feel really sick, shake for about 10 - 15 mins and then was completely knocked out and weak for the next 24 - 48 hours.

I have found though that since my INR is better controlled I have a lot less episodes, so in my opion there is a def link between the two

:)

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