Hi , i'm new to this site and was wonder if anybody has uncontrolable mostly arms but also my legs lately , I only get this at night and usually within 45 to 60 mins of sleeping.they wake me up and can last up to just a couple of mins to about 15 mins or more they are sarting to really freak me out !!
I'm fully aware of them i also wake my husband because he ends up getting in the cross fire. After they jerk i get horriable cramp like pains and soreness in my muscle,
i went to my doctor who refered me to a neurolgist ( she said they sound like i'm having night time seizures0 i dont see him till Dec 22.
i have had them over the last 20 yrs but never to this level before also my left side of body from my face down my leg are weak feeling almost always but more under stress. I've been under alot of stress since the first of nov my brother passed away from lung cancer, another brother is in late stage colon cancer and just 3weeks ago my sister has been dx with non hodkins( she has started her 2 nd round of chemo) My husband says I'm under alot of stress with whats going on lately and feels thats why they are happening almost every night now and more pronounsed then before..
Sorry so long thought if i gave some info of whats going on would help
Oh I'm only on a full aspirin have had a blood clot in left eye, ms symptoms,mri should lesions one dr thought maybe small stokes another said ms and yet another said old age!!9 i was 49 at the time ) was dx about 4 yrs maybe longer with hughes /( symptoms of lupus no dx 0 and just dx with sorgrens ( sorry about spelling)
thanks for any replies , Sandy
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sr56
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Hello, what a horrid time you are having, it seems to me that you have had a multiple of opinions thrown at you, and some sense in their somewhere. Have you had any referral to see a specialist with APS experience, ie asking your Dr to send you to St Thomas'. It is true that any form of stress can make any condition worse, but not quite knowing what is going on, can be a stress in itself. I would take a few minutes to write down your history to date in bullet points, and episodes, especially all the things above, and hopefully get that decent referral, and your blood tests accurately done, also consider making a swift private appointment to see Professor Hughes at London Bridge Hospital, many of us on here have had to do this. It has taken me nearly 10 years to be referred to St Thomas' and I did go privately to London Bridge to add some clout to my families diabolical plight in terms of being sidelined and ignored. I wish you the best of luck and hope you feel better soon.
On another note, I had the most terrible night time restless legs... and I now take magnesium, which saw that off, but please bear in mind that until my next review, (this week), I am currently only on asprin.
Thanks for your reply I was sent to a hemotolgist when My blood work kept coming back low platelets ( for years) finnally My primary doctor sent Me to Him to see what was going on. When i went to Him He said it looked like i had sticky blood so He ran the test it came back positive He then waited 3 months and ran another one which also came back positive so He put Me on a baby asiprin. Finnally after finding out i had a blood clot in eye He upped it to an adult doseage,
He dosent seem very knowlegeable of Hughes I've explained My other symptoms MS balance jerking Muscles and many many other symptoms and He has never heard of them being any effects of sticky blood ( He never heard it called Hughes) only blood clots , strokes and heart attacks , so He wont try Me on a blood thinner,
I live in the US so its to far away to go to see Dr hughes,
I wish You well with your review this week and that you can get the best treatment
i am so sorry for all the worry that has befallen you..you are under major stress at this time and without an illness it would make your body go "crazy"..but i too have the movement
i also have had a hard time finding the correct diagnosis ...it took over 10 years but with the knowledge of APS beginning to become more widespread others won't have to wait so long...i am on coumadin and also take a medicine to control my restless legs...it helps some but not completely....my APS doctor attributes it to the APS..
talk to your doctor again and try to keep a journal of what and when it occurs...
I see you are on coumadin ( do you live in the US? )
I live in New York and when i mention Hughes nobody here has heard of it , if i say sticky thick blood then doctors know it but only think of it being related to blood clots strokes and heart attacks so I'm only on a adult asiprin) i have had a blood clot in my eye.
Thanks!! My husband has said the same thing about keeping a journal of my symptoms for the doctor. when i see the nueroligist I'm printing out about hughes to show Him , maybe that will help
My husband does not have APS but does have what you are describing. He saw a neurologist and was prescribed a small amount of a Dopamine agonist called Ropinirole which he has to take 2 hours before bed. It helped.
I also believe that the symptoms were brought on by stress. He was told he had periodic movement disorder/restless leg. He had a sleep study done and there was no sign of seizures.
I hope that may be a little reassuring to you so that you can know that you may not necessarily have what the GP says. Don't panic until you have seen the specialist. Stress can do all sorts of things to your body. The more you worry about this the worse it will be.
So sorry to hear about your family too. I wish you all the very best of luck and know we are all thinking of you.
Thank you soo much for writing about Your husbands Dx i really feel that will be my dx as well , but boy is it scarey to not beable to control my arms and legs i know it has to be stress related i would always say to my husband to becareful tonight,( cause of being over active during the day and going to bed past my usual time would almost always tigger one.) My husband calls them the ( whack a mole ) attacks , thats a game where moles come out of these holes and you have to hit as many as you can My poor husband , they were very minor ones for a long time , but lately they are very intense i know i'm being more stressed.out lately
Thank you I miss My big brother so much we were very very close He was 1 1/2 yrs older but we were called the twins because we looked alot alike and being so close My other brother only has maybe a couple of more months with his two year battle On a good note My younger sister is doing great and has a very high rate of beating her cancer She lives in Alaska I live in NY but we text and talk everyday
My son has just gone to live in the USA - San Francisco. I miss him so much too. Not knowing if I can get travel ins makes it worse cos you want to feel that you can go out there if you want to.
Life is B**** sometimes but we just have to be strong. There are lots of people here that will give support to you (and me) when we are low. They understand things that other people who don't have the conditions we have will feel.
So don't be afraid to have a blow on here if you need to vent or need any support. Thats what we are here for.
BTW my hubby just gets chucked out to the spare room if he whacks me too bad!! Lol we both get some sleep then. I love the Whack a mole! I think it certainly is whack something at 4 am!!!
I too have issues with the jerking while falling asleep. It just started about 18 months ago after a treatment with steroids for a transverse myelitis attack. It doesn't happen everyday and I don't have pain with it. It's really just more annoying because it kinda wakes me back up while I'm finally dozing off. I imagine it's some sort of neuro issue after the multiple TM attacks I have had and have permanent issues/damage from.
Absolutely!!!! Uncontrollable jerking is one of the first symptoms my Sissy started with. We were wondering if it is possibly a blood thinner side affect??? Lene'
i have the leg thing! you are not on your own. i have been to see a neurgolist and they havent really helped. i have alot of pain and it feels like someone has put a band round my knees and my lower legs have a disco all by them selves!!! its very hard and the next day i dont want to get out of bed as my legs feel like lead weights. reading this has nearly made me cry as i was starting to think that it was all in my mind. there must be some sort of link as a few of us see, to get it.
Restless leg syndrome is a very common condition especially with conditions like Fibro. It seems that it can also be for other conditions too or maybe on its own. There are a number of medications that can be used very successful in controlling it so you need to go to your GP and discuss this with them.
Yes and they put me on Klonopin (Clonazepam) 7 years ago
My husbands on that drug and it helps but he doesn't like taking it as he says it makes him drowsy in the day.
On the first night on holiday a few years ago he had a bad episode and 'launched' himself out of the bed and tore a 2 inch/ 5cm hole in a shoulder muscle and had Physio every other day the whole 2 weeks and was in a sling fastened round his waiste!
When we do sleep in the same bed I end up with bruises up my shins, arms and have even been hit in the face! Not good with an INR of 4-4.5. (He does not have APS)
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and that you can get the best treatment 
so I'm only on a adult asiprin) i have had a blood clot in my eye. 
Does anyone else with APS/SLE have cold/stiff/numb feet, hands and legs but DON'T have Reynaud's i.e. no skin discolouration?
APS and Small Vessel Disease - MY MRI
So confused and so miserable
More recent results *Updated with family history.*
waking up weak not moving
