Temporary paralysis

[DawnS]

Does anyone with Hughes have "attacks" were you become temporarily paralyzed? This is happening to me and I think I am dying in the moment. Thanks guys I could really use your input!

[jetjetjet]

hi dawn- i have times when my muscles will kind of lock in arms and fingers and i also have muscle spasms in legs and arms - the doc s are looking into it now - they just x-rayed my spine completely - next emg/nvs-- then avascular study - i dont know where will take me , but the more i learn of this i will let you know if you would like --------jet

[julie99]

I am still being investigated to see if I have Hughes, but I have temporary paralysis often and it's scary!! I can't move any part of my body, can't open my eyes and, worst of all, can't speak! Tha attacks used to last for 2 hours, but now are usually 40 mins. In hospital last year they said it was "functional weakness" ie messages not getting to the muscles, but offered no treatment or other investigation. At my wits end, I searched the web and found it could be Hypercalaemic periodic paralysis, which is to do with low potassium, calcium etc. But initial investigations by my consultant weren't conclusive, so we're checking if it's Hughes. The only thing we have found to bring me out of an attack is my husband massaging the soles of my feet. This sends an "electric shock" feeling up my legs and gets those moving. He then has to massage my arms and face and hands to get movement there. Don't know if that would help you to get out of an attack. Other times I just come out of it spontaneously and just as suddenly as when I went into it . Often the jaw stays clamped shut for hours afterwards and I either grunt(one grunt for yes and 2 grunts for no) or write down anything I want to say. I was planning to ask on here if anyone else had similar symptoms, but hadn't got around to it. Glad your entry has finally got me galvanised into doing so. Let's hope someone else on the site can give us info!

[MaryF Administrator]

Both of my children get this, my youngest son, had a severe migraine which kept him off school, (on medical advice for over a years), his continual migraine lasted 15 months and 4 days, during this time he had episodes of such pain, that legs would switch off, it also affected him in terms of noise, noise made him vomit. This has currently passed, however my daughter 14, has now had this for two years, a daily headache with dizzy spells and at times slurry speech and complete body weakness here APS tests negative, however Professor Hughes said if I tested negatative, which I do (clinical diagnosis), but seronegative label... then she would. also test negative!

[jessielou]

hi Dawn

Welcome and glad you found us hon,

I get this too and generally goes along with headache/ migraine or on waking up. It takes a while to get moving too. My gp pretty sure its associated with the Aps and blood flow.

It is scary cos 2 of my children are showing symptoms as well, my gp is prepared to test but my 12 year old son has Autism and is terrified of needles and doctors, so waiting and watching for now. Also not sure if I want to label them yet.

I have lupus anticoagulant positive Aps. We all differ in testing but have a lot of symptoms in common.

I hope you have a decent gp and are seeing a haematologist or rheumy, maybe sort meds to lessen symptoms hon.

Take care gentle hugs love Sheena xxxxx

[WayneL]

Hi, Dawn.

My daughter has periods of "selective"paralysis, where limbs refuse the commands of the brain and , as she says misbehave themselves", to the point that she cannot get out of bed at times or even raise her arms up.

I understand from what i've read that this is not uncommon.

I do not have any advice on treatment, however, but her GP has put her on diazepam (low dose) to try and combat the tremors that precede the paralysis like symptoms. it does seem to be helping.

Hope you find some help here, like I have.

Wayne L

[haley]

Yes, this did happen to me. I couldn't move my hands. I was totally shocked. It was brief, lasting less than 5 minutes. It was not just a hand"falling asleep" feeling. I had no sensation and I could not move either hand. It happened well before I was diagnosed with APs and my family witnessed it. I was not so sure that the doctors accepted it. Though other things happen to me, the paralysis has not been repeated.

[DawnS]

Thanks guys this has happened a handful of times and I have no sensation or ability to move my arms and legs I mean not at all. It can last anywere from half an hour to one time being eight hours! Julie you mentioned that you cant speak I find that intresting becausr I can barely breath ( it attacks my lungs too) so I cant speak above a whisper. For me it only happens at night so my husband will be in bed beside me and I cant wake him because I cant speak above a whisper or move so I lay there staring at him hoping he will wake up! Sheena you also said something that intrigued me. You mentioned your child has autism and my son does too. With him I was undisgnosed so he had intro uterine growth retardation and was born weighing 3 pounds and barely clinging to life. How was your pregnancy? I am just wondering if autism might be tied to kids born to hughes moms?

[jessielou]

Hi dawn

I know other mums with lupus/Hughes who have children with autism???? Makes you wonder.

My pregnancy with my son was very difficult, at 18 weeks discovered cysts in babies brain on ultrasound (? Edwards syndrome) had to wait till 25 weeks and hope the cysts had gone. Then went into labour at 28 weeks, managed to hold on till 34 weeks, emercency c-section, upon delivery discovered placenta was badly infarcted, he was tiny and ill. Had asthma n other difficulties very early on.

I also know other mums of autistic children who describe similar difficult pregnancies and deliveries????

Think its possible there is a link with oxygen starvation in utero?

Hope you well today.

Take care gentle hugs love sheena xxxxxx

[Hidden]

I used to get temporary proalysis in my sleep but i haven't done for years now - somehow it would wake me up and i couldn't even speed up my breathing - I always felt like i had seconds to live. it would go off as quickly as it came on and never lasted longer than a few minutes but it was very scary nevertheless. as i said i haven't had them in years now and i wonder if it is linked to the blood thickness... i got more before i was diagnosed but they didn't go away entirely when i was on warfarin (i struggled to control my INR, despite self-testing far more regularly than a hospital would have) but now i am on Clexane I don't think i have had more than one episode in the last two and a bit years!!

Tx

[healthwithrenee]

I suffer from many episodes where I fall semi-conscious (can't move, speak, etc.) though i can hear. My limbs just kind of collapse, and I have to be picked up and moved to a safe spot. It's scary, when it can last up to several hours. Tasch, I'll have to look in Clexane. Thanks for the recommendation. I SO want to be able to drive again--it's been two years.

[DawnS]

I am so greatful that my episodes are only at night ( at least as of now ) so it doesnt effect my driving. I dont know what i will do if it ever does though because i have 3 young boys that need a functional mommy! Good luck renee i will pray that you can drivr again i know thats a big blow to yout independance! Tasch your description is perfect i couldnt have said it better... It does feel like you have seconds to live!!! So scary.... Thanks guys you have been very helpful! God bless you

[julie99]

Hi DawnS. I've been too ill to ardd any more until now. No, I can't speak when I'm in a paralysis attack. I sometimes get a bit of warning I am going to have an attack by my throat tightening and my breathing changing to short panting. The attacks haven't happened in the night, just happen with no pattern. Mine have started to increase in length of time to an hour. Used to be 2 hours then went down to 20 mins. I'm due to see a haemotologist for the first time on Wed 15/02/12, a Professor Toh at Royal Liverpool Hospital. Does anyone know of him? I just hope he knows about APS and isn't just dismissive!!!