Interesting

[lloydyuk]

I was looking into a few of my own symptoms past and current that are tbh odd. At the time of my illness being very serious the medics were and have been unable to give a diagnosis of the involuntary muscle spasms and twitches I had and still do to a lesser degre. I've never heard of the following has anyone else? I did get dx I had myoclonus not the other.

en.m.wikipedia.org/wiki/Ben...

[minnime63]

Yes! I do! The rheumatologist who diagnosed me said it was APS with Chorea. She was quite excited about it as it is quite rare and usually only seen in the big London hospitals and only read about elsewhere. She said she would have brought her registrars in to see me if they weren't all on rounds! Mine also has settled down somewhat but it rears its ugly head when I'm tired or under stress. I have things going on in the brain and spine (lesions, an aneurysm and stenosis) and wonder which might be to blame. I can't ask the rheumy as she discharged me straight after diagnosis! Have you not been told anything about yours?

[MaryF Administrator]

Hi there, here is the page off our charity website regarding this issue....hughes-syndrome.org/about-h...

MaryF

[lloydyuk in reply to MaryF]

Thanks Mary, the page has been updated since I last read that.

Danny

[AngieRae]

I have continuous muscle spasms/twitches all day every day. They are not painful, but annoying. They started in June when my daily headache started as well. Neither have let up since. It's been a long 9 months. If you are having brain or spinal lesions, it could be due to that too. Your nerves tell your muscles what to do, so if the signal has any disruption this could happen. I'm curious if mine are due to "ms" or sticky blood. Does chorea have to be severe spasms and twisting or can it just be mild twitches and spasms?

[AngelinaN]

I too have jumping twitches far more noticeable when I am stationary or worse still trying to sleep. Predominantly I my legs and feet - and often keep me awake. I can have them in my hands occasionally and moreover this would cause me to throw or drop or spill something which absolutely infuriates me..!!

Until this forum would never have thought this was anything to do with APS/Hughes...?? When you are only allowed to visit GP with one ailment who puts all the pieces together.

[lloydyuk in reply to AngelinaN]

I know exactly what you mean. I often can't pick up a cup with drink in it as like you say I'm likely going to throw it over myself or anything near me. So frustrating!!! Do you mind explaining what you mean by jumping twitches please as I am way more jumpy than I used to be and I can't work out why. Particularly when I'm tired or cold, which never used to bother me at all.

Take care

[Lure2 in reply to AngelinaN]

"Sticky Blood Explained" by Kay Thackray is a book you can find on the Hughes Syndrome Foundation Charity website. She writes about a lot of the symptoms and she has APS herself and tells us how it is to live this this illness. There is a second book also, called "More Sticky Blood". It is also good for relatives to read to understand how it is to live with this illness.

There are other books from Prof Graham Hughes of course but I prefer this one.

Try to get an APS-Specialist. That is exstremely important to be correct treated with this rare illness that so very few doctors understand. It is the same her in Sweden. I am lucky, I have Specialists that understand me.

Kerstin

[AngelinaN]

Hi again

sure - the jumping twitches are predominantly in my legs. Sometimes when I walk I involuntary trip or my ankle goes over - not the odd time but frequently. Plus I am a walker not a driver so when I am resting my legs don't sleep they twitch and jerk at my ankles or knees or hips and I cant still them. I use to get out of bed and stand on tip toes for a while. When they are really bad I sleep on the sofa and have my legs upside down on the wall to try and make them lighter and see if they rest. Even sat here in edge of my bed my right foot is moving and my toes curl under my foot - I actively twist or stretch my foot the opposite way to try and stop it. Its not painful though I do suffer with other leg pains in my calf and thigh and more so since my dvt's

[mylafont]

I have the twitches. Now they look more like Parkinson. In the beginning they were severe, very jerky and was upsetting for my family to watch. I do find they are worse when I'm stressed or in pain but I can control them with some effort. They are mostly in my right arm and leg. I also have brain damage from the APS and it make sense that my nerves are affected.

I also at different times of the day have issues with my vision. No one has been able to tell me if this is related to brain damage or APS.

[jetjetjet]

I have 2 types of tremors and severe muscle spasms in neck-arms -back- legs !!