Hello, I'm new on this forum, although I have been on the lupus healthunlocked forum since last year.
I have been diagnosed with lupus in Sep 2012 and started appropriate treatment as a result. Since then the vast majority of my symptoms have come under control but two.
One of these symptoms not going away is numbness in my hands. I get this every night. I had brain MRI which was ok, muscle and nerve conduction tests that ruled out peripheral neuropathy and carpal tunnel syndrome but showed slight muscle weakness on my left side. A neck MRI showed spondylitis but mild. My rheumatologist suggested I change my pillow and do exercises to improve posture. I did both of these but no change in my numbness. And it isn't as if I sleep on my hands, the numbness occurs even when my hands are free. Sometimes if I sleep on my tummy, the side of the face and neck onto which I sleep also goes numb.
The second symptom that isn't resolving is that sometimes my left eye goes filmy although no film appears on it, just a sensation. That is accompanied by headache and eye ache that do not respond to regular painkillers. The ophthalmologist checked the eye and saw no reticular vasculitis, although he did see some slight nerve inflammation that he said it was addressed by the steroids I was taking at the time.
I'm not on steroids at the moment, only on Plaquenil. As some of the symptoms for lupus are similar to vasculitis, and given that both respond to steroid treatment, I'm wondering whether these two separate symptoms have been "mislabeled".
Does anyone suffer from such numbness, please?
Written by
Purpletop
To view profiles and participate in discussions please or .
I have MPA and do have numbness in my left hand and also my feet but it is caused by peripheral neuropathy.
Do you have trouble with your shoulder at all and could it be a trapped nerve?
Just trying to think of things which might cause it. Previous to my illness I did sometimes get complete numbness in my arm which would be solved by dangling the arm down the side of the bed. It was if I had trapped nerve in my shoulder and seemed to come from the big muscle under the arm. I also get very stiff muscles in my neck which can affect my arm and my vision.
Have you read the Vasculitis website. vasculitis.org.uk/ It might give you some clues there.
Sorry if this is not very helpful but welcome to the site anyway. I am sure that someone else will come on and hopefully be of more use.
Thank you for responding. I do get a lot of tightness in my neck, which is probably why the rheumatologist believes that is the cause. I'm working hard to stretch those muscles at the moment, so I will see if this improves in few months of doing this.
Hi. I do get a sort of numbness every now and again at night. It is much like the pins and needles you get from lying on your arm but I don't think that's the cause.
I have quite low blood pressure and actually take beta blockers at night which drop it even lower so I've always assumed the numbness was as a result of that. But I have no proof of this.
It'll be interesting to see if anyone else has similar problems.
This is very interesting, I sometimes suffer with low blood pressure,it makes me wonder now. I don't really know what to think about it. I don't know about you but I want to know the cause of every symptom I have, just so I know what I'm dealing with. It is optimistic, I know, even doctors don't know it all, but I hate uncertainty. And our illnesses are so unpredictable, it is hard sometimes to tick off the list a symptoms or two. Thank you for your response.
It is interesting that you have low blood pressure too. And my Vasculitis is HUV which is very similar to Lupus. Sounds like I should drop in on the Lupus forum some time
But I agree it's good to know what you're dealing with so I think I'll push this point when I next see my consultant.
You say they've checked for carpel tunnel which usually affects your thumb, first & maybe middle finger but the Ulnar nerve can make your little finger & next finger go number. It's caused by the Ulnar nerve being trapped at the elbow. I would imagine this was covered in your checks but just in case................
The nerve conduction test checks all the nerve responses, apparently. I have asked this question in the lupus forum too and it seems that more people there have the same or similar symptoms then in this forum. Which leads me to believe that it could be more related to lupus than vasculitis. That is worth knowing. Thank you for taking the time to consider and respond.
My vasculitis is large vessel, and I've lost the pulses in my wrists and arms. it has affected my aorta, and carotid arteries as well as those in my arms. Ultra sound scans show that the major arteries in my arms are almost completely blocked! This means that I have cold hands that often cramp or go numb, especially when I use them. At night I have numb arms and hands or pins and needles. These are all getting better with treatment. I also had visual disturbances before I started steroids ...very frightening as whatever I looked at broke up into small pieces in a sort of jigsaw. An eye check showed no problems with me either.
It could be worth asking for checks on the way the circulation in your arms is working? Good luck..
That is very useful, thank you, I will definitely ask my rheumatologist to check that. Or cardiologist perhaps? Who did your checks, what specialist, do you remember, please?
At that stage it was the vascular surgeon at our local hospital who made my initial diagnosis. Other checks/scans were done by a rheumatologist there. Now I go to Addenbrookes. I'm pausing at the moment as trying to turn a blind that I'm making inside out has made my hands cramp again. Very boring...
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Stopping Thalidomide treatment; starting Cyclophosphamide (in addition to masses of other stuff)
CNSV and brain damage
joints and muscle inflammation 
Is this Vasculitis? Scalp
Can an MRI scan diagnose Vasculitis?
