anyone have this problem,been having it for a while
have had nerve conduction studies done a while back and they were ok,consultant thought it may be the way im sleeping,but i am getting them all the time down my right arm
anyone have this problem,been having it for a while
have had nerve conduction studies done a while back and they were ok,consultant thought it may be the way im sleeping,but i am getting them all the time down my right arm
What is your diagnosis? Numbness in parts of the body can happen when there is brain involvement in the vasculitis, either isolated as in cerebral/CNS vasculitis, or a more systemic form. I get numb limbs an awful lot from my cerebral vasculitis. It causes problems all over my body.
Hi quinnster
Just a suggestion, but do you have tense muscles?
I find I can get completely dead arm sometimes when I wake up. It seems to be coming from my stiff neck or under the arm not really sure which. I find if I dangle the affected arm down the side of the bed pressing on big muscle under the arm it takes it off.
Also the big muscle in the neck can affect it.
I do the shoulder rolls when I get up as well. Physio may help. I wasn't a great believer until I tried it. Now I swear by it I am a convert!!!!
Good luck
Lynne
thanks i have wg with kidney involvement,but having some minor eye probs at the moment as well
Hi Quinnster
I haven't had numbness in my arms, sometimes I get tingling in my hands and fingers (I'm supposed to wear some delightful support "gloves" in bed which stop my wrists and fingers from bending - I tend to forget more than I remember).
I've looked at the common symptoms for WG and there's "Nerves: loss of sensation, weakness, unusual painful symptoms in the hands and feet (hotness, pins and needles or "electric shocks") and rarely paralysis or stroke."
If it is a while since you were last tested maybe you ought to ask for this symptom to be looked at again. Maybe others might be able to offer better advice based on their personal experiences.
Kindest regards.
PatriciaAnn
Hi IS got numbess in my top left arm muscle and could not lift it up IT had to pull my arm uo with my right arm every morning and do shoulder rolls to try and gdt it working. I also got electric shots in my feet too. But since being on steroids I can move my arm it still feels like a dead weight but it is working. My feet have improved to stinging and pins and needles but it is better than the electric shots. I have just started cyclo treatment so hopefully when it kicks in it will get rid of it. I have been newly diagnosed with wegerners so I am still learning.
Best wishes
Anita
I had similar symptoms with aching/painful arms then legs, and was admitted to hospital five years ago. They took three weeks to realise that I had a form of vasculitis, by which time I had lost the use of my limbs. I still cannot use my hands or feet.
Ask your GP for an ANCA test plus other specialist blood tests. Don't take No for an answer, and if he hasn't got a clue get him to speak to the Rheumatology dept at Oxford Nuffield. They have a Vasculitis speciality
I have large vessel vasculitis, and the numbness and pain in both my arms has been around both night and day. At its worst I was waking several times a night and hanging over the edge of my bed to shake my hands and arms into some sort of feeling. An ultra sound scan showed that the arteries in my arms were almost closed in several places....and the lady who did the scan called her colleagues in to have a look as she'd never seen anything like it before! Ultra sounds are quick and easy, so it might be worth asking for one? Hope you get it sorted soon, as it really does mean even more disturbed sleep!
Hi
I have peripheral neuropathy as a result of vasculitis, my specialist described it as a result of the inflamed blood vessels passing through the nerves and not giving them enough blood supply. I was told nerve conduction studies often don't pick this up.
When my symptoms of it first started I would get both numb arms and legs (but worse on my left side) and although not completely gone now a mixture of predisolone, mycophenolate and hydroxichloroquine have greatly helped. I found as soon as I lied down at night thats when the numbness would be at its worst and still find now that I have to sleep with my arms straight, some mornings I still wake with shaky legs, arms and numb fingers and need to get walking around to get the feeling back. I also get a lot of jolts in my limbs, where my legs or arms visibly jump up. It also made my limbs weak and ache, I remember holding my arms up to wash my hair for example would make them feel like I had been lifting weights and would take hours to recover. I was prescribed Pregabalin ( I got side effects so had to stop using it) but think it can really help and also help to get a good nights sleep.
Take Care
Jenny