Can aps cause dystonia?

[Charts]

Just wondering if anyone has any experience of dystonia with aps. Admitted to hospital a few days ago with what I thought was seizures but now told are not seizures and possibly a movement disorder like dystonia. I get full body muscle spasms. So I'm wondering if aps could cause dystonia. I'm down to see a neurologist but need to know if I should mention aps as a possible cause. My ct brain scan was ok so no stroke.

[KellyInTexas Administrator]

reports of chorea are known to be associated with APS. So movement disorders are noted to be associated with APS.

I am not familiar with Dystonia, but your neurologist might be.

Professor Paul Holmes ( neurologist/ APS “fluent”) in London would be the brain for your neurologist to pick if he had any questions.

[Charts in reply to KellyInTexas]

Great thanks for that!!

[Charts in reply to Charts]

Just one question. Professor Paul Holmes is a neurologist but knowledge with neurological aps?

[KellyInTexas Administrator in reply to Charts]

sorry, put that in the wrong place earlier-

Yes, Prof Paul Holmes is a professor/ neurologist who is very knowledgeable about neuro APS.

[MaryF Administrator in reply to KellyInTexas]

A great idea, that doctor! If a referral can be made. Also bear in mind the link with B12 deficiency, something frequently missed: n.neurology.org/content/97/....

MaryF

[KellyInTexas Administrator]

yes, he is. Very knowledgeable.

[Charts in reply to KellyInTexas]

Very interesting to know. Thank you

[Madmumma]

Hi, no idea if it does or not, sorry. But have you tried magnesium supplements as that’s great for stopping cramping and spasms. At 440mcg mg citrate is also supposed to be as good as any anti-depressant so worth a try whatever! Good luck! Must have been very scary for you.

[Charts in reply to Madmumma]

I did start taking magnesium but at the time I was feeling very off, then I start questioning is it what I'm taking so stop taking it. I seem to react to weird things like medication, chemical sprays, peanuts. May try them againThank you!

[Jumper99]

I agree with Kelly. Chorea has been reported to be a symptom of APS although it’s rarely mentioned. I was lucky enough to go to St Thomas for an APS meeting, I think for its 21st birthday. One of the speakers there was showing slides of people with chorea, the few patients who were there were horrified as we had never known about it. It was like ‘omg, I didn’t know we could do that’. So I remember it from then. I don’t know anything about dystonia either but I looked it up and although similar there are observable differences. Chorea is more random. I would certainly mention APS at the appointment though as there may be an autoimmune connection. But the best of luck with this, it must be very difficult for you.

[Charts in reply to Jumper99]

Yes I will mention it as it's just bizarre and considering they don't know much about aps its something they should consider.Thank you!

[Tennisbum]

HI. I don't know if this helps but I lost a full range of my voice I ended up at GBMC'S Voice Center which the rock stars use when they abuse their voices. Affiliated with Hopkins but

the dept head was from Vanderbilt. They verified that I certainly did not sound like the old me. They did not have a diagnosis but they verified the loss. If I were to answer the phone

my friends did not recognize the person answering. They did not think it would get worse.

Return if it did. Hope that helps. Good Luck!

Susan

va

[Charts in reply to Tennisbum]

I'm just finding I get really tired when speaking and then find I'm talking slower. Thanks for your reply

[lloydyuk]

yes I had/have it at times. I had it prior to diagnosis & like you got admitted to hospital for testing. That was back in 1995. Years later I had a haemorrhage & had severe motor function issues which admittedly were haemorrhage related however my APS markers were extremely high as I survived CAPS in 2013. If/when I’m tired as I am this evening my movement issue’s return until I’m rested.

[Charts in reply to lloydyuk]

I had this before I got tested and only when aps come up I thought oh I might have the answer. But I am struggling to find anyone who has this. Do you have full body spasms? Mine start off with one thing moving randomly like my hand or foot, then all my muscles seem to spasms at the same time and grip my whole body in for about 20-30 seconds release/relax then grips me in again. So I can see why it looks like a seizure. Is it just over doing it cause this for you? This is the main cause for me, also when I'm coming down with something especially covid (also recently norovirus) another weird trigger is eating peanuts, chemical spray I used once. If I listen to my body and rest I can prevent it most of the time. Just a bit awkward trying to go out with people who don't know this about me and worrying it's going to kick off.

[Charts in reply to lloydyuk]

Sorry one more question do you take any meds that stops It? They gave me diazepam in the veins and stopped it in seconds.

[lloydyuk]

initially it was my hands & face strangely. Then after the bleed it was full body strong contractions like everything tightened in an instant then relaxed…almost like an electric shock. I was initially on epilepsy drug’s however I asked to be weaned off & it didn’t make anything worse or better. Ultimately time made things better. The best thing I did was to reluctantly not resist the spasms & let them happen. Sort of relax & suffer a bit. Over time it stopped unless as I said initially I am very tired.

[Charts in reply to lloydyuk]

Yeah that's what I have said it's like an electric shock. I had 3 operation's quite close together and the 3rd one was when it all started. That was 3 yrs ago, was hoping in time it would get better but it hasn't. The last op I had 2 weeks ago really set it off. When I woke from the anesthetic it just wouldn't stop, the nurse asked if I had tourettes. Just wish I knew if it is aps causing it, a neurologist is not going to consider aps I don't think. You sound like you were lucky to have survived caps! That's what I was terrified of going in for an op.

[lloydyuk]

I’d say to discuss it. Initially I was told I had myoclonus. It did take a few years to reduce & fizzle out for me. I literally let it happen whereas when I resisted it built up.

During CAPS it was so bad I believe I was placed into an induced coma to give me a break. So much was going on at once I honestly can’t say if it was the brain injury or (C)APS that caused it unfortunately.

[Charts in reply to lloydyuk]

Never seem to get to the bottom of why these things happen! Thanks for taking the time to reply to me.

[lloydyuk in reply to Charts]

I really hope you get some information & an answer/solution.

Keep on keeping on regardless!

[MuttleytheGooner]

Not sure but I have APS and my Mum has been diagnosed with Dystonia.

[lloydyuk]

I just saw these on an instagram account called clinical physio.

Interesting

Movement disorder description

[lloydyuk in reply to lloydyuk]

there are 4 pages I’m trying to add with clear useful descriptions. No idea why they aren’t showing here!?

[Charts in reply to lloydyuk]

Thanks for that!! I'll try and find it but I'm puzzled with Instagram etc.

[Charts in reply to lloydyuk]

I found it. Thanks again!