Hi, hope someone can help!
I was diagnosed last year, and have had sicca symptoms since October. In January I started getting numbness and tingling in my left hand, particularly at night. I told the rheumatologist at my appointment in March, and he thought it could be cubital tunnel and sent me for nerve tests. The doctor doing the nerve tests thought that it might just be where I'd leaned/banged my arm in a strange position, and thought that it would go away in time.
Since then, the pain has become worse and worse, and it's now in both hands/bottom part of arms, and has very recently moved to my feet. It's still my hands that make me wake in pain during the night though - I have to shake them hard for about a minute to get the feeling back in them.
I've just Googled peripheral neuropathy, and what I read stated that it always starts in the feet and moves to the hands. Obviously what I have is the other way around - I just wondered whether anyone else had it this way?
I'm also concerned that it may not be the Sjogren's - an MRI last year showed that I have a Chiari Type I malformation, and I also have epilepsy, so I wonder if it could be a symptom of one of these (CNS involvement?). I haven't got another rheumy appointment until September (I'm in England, so I have to wait for my appointments!), and I'm worried that whatever is causing it might have been left too long by then and that I should be doing something!
Very grateful for any suggestions - thank you! :)
I have PN. Have you seen a neurologist? I feel like you really should.
I am in Canada. I have only been to the Rhumy once and get most of my help form the neuro doc"s.
It is not unheard of that you are noticing trouble first in your hands.
Have you had your B12 levels checked? Mine is normally low and I get relief from having a normal to high level in my blood. I dont absorb it so I take shots. It helps me with stopping the progression, pain and fatigue.
There are PN forums around and you might want to check them out to learn about symptoms and tips till you can get a doc to see you.
Thanks so much Piebird, for taking the time to respond. I'm seeing my GP this week, so I'll request that they refer me to a neurologist, I think that's a great idea.
I didn't know that B12 levels were involved (I need to find one of those forums!), I'll speak to the doc about that too.
Thanks again, take care :)
Hi Purplelily :)
As you don't absorb B12 it is possible some other vitamins may be deficient as well. Low Vit D can cause neuropathies so it would be worth getting that checked out too. I agree with Piebird - a neurologist is the way to go. Good luck!
Take care - Scottie :)
G'day purplelily, I agree with the others. A Neurologist is the way to go. There are many other issues that could be causing your problems. A Neurologist can at least help narrow down the field.
Sorry it takes so long to see a specialist. I hope you will find your answers soon. Please keep us posted.
Seeker
I agree, it's time to see the neurologist and get checked for B12 etc.