[Jesse88]

Hi everyone. Ever since my dx of lupus and SS, I've had this nagging feeling that something else is going on, but I could be wrong and I'm hoping you can assist me in finding the answer. Before my dx, neurologists thought my left sided neuropathy in my arm and leg was due to cervical spine problems. When the problem continued to move up to my face, they thought MS but eventually the lupus/SS dx was confirmed. Even though the meds nearly eliminate my symptoms, I will still get pain from my face all the way to my toes if I lay or sit in a certain position. Now, that sounds like I'm pressing a nerve in my spine or something by sitting/laying wrong. But I believe spine problems don't affect the face. So my question is, those of you with neuropathy due to lupus and/or SS, do you find that certain body positions will cause you to have symptoms even though your meds usually keep them under control? I'm just trying to figure out if I should be pursuing another angle of this by seeing a neurologist again, but I don't want to look for trouble if there's none there. Thank you for your help. Only fellow lupies can give me the answers I need.

 

[lazylegs]

Hi Jesse,

I have never experienced anything like you have described. Since this sounds like it happens regularly I recommend having it investigated.

Take care,
Lazylegs

 

[Katharine]

Hi Jesse,

I agree that it needs looking into and sounds like you may need to look into this more thoroughly with the neuro.

I have neuropathy problems too which are not 100% clearly defined (I have symptoms of both demyelinating neuropathy and axonal neuropathy). I get neuropathy in my feet, up my legs (sometimes up to mid thigh), in my hands and arms and also, recently, in my face. It is not constantly bad any where (though I can feel it a little all the time) and in the face seems more sensory (as in "just" the skin). If I touch my face (even lightly on bad days) or lie on my face, it gets a lot worse. I'm also more affected on the left than the right but not exclusively and the face is both sides.

Me getting this in the face is new though the neuro does know that my lack of sensation is getting slightly worse in general. I haven't yet been to see her with this new development as it hasn't got worse so I'm waiting a bit to see what happens - I did mention it to my GP.

My neuropathy symptoms improved quite a bit on gabapentin (as did headaches that were also apparently being caused by CNS problems) and I know that I can increase my dose of gabapentin - maybe that's what the neuro will say for what's happening now - but I want to see how it develops and obviously, if it gets worse, see her.

I sometimes have very bad EMG/nerve conduction results, sometimes very near normal - It seems to fluctuate with disease activity without necessarily being linked as these recent symptoms come at a time where my usual lupus symptoms are pretty stable, even good.

I know that none of that gives you an answer. These things are complex even for the neuros and each individual case needs thoroughly looking into properly. I would urge you to push to get answers on this and not let it drop.

Katharine

 

[Jesse88]

Thank you both for your responses. Katherine, your symptoms sound quite similar except my face sensation is a tense/tired feeling, as if I've been squinting a long time and now the muscles around my eye and cheek are tired. And I just feel it on the surface too, but my GP says the brain can't feel anything and I'm probably having inflammation in the brain too, since the sensation wraps all around the left side and back of my head. You should probably ask your doctor about that too. All the symptoms are slightly worse since my Imuran was dropped from 200 to 150 mg. but not bad enough to ask for more meds at this point. I'm trying so hard not to add to my meds list.

I'll tell the rheumy about this at my next visit and see if he suggests a neuro, but I hesitate (and I know you'll think I'm foolish) but seeing yet another doctor makes me fear I'll look like a hypochonriac, looking for attention....like seeing him every four months isn't enough (I just graduated from every two months). I had to see an allergist recently because my cold induced hives were getting worse and he tested and confirmed the dx and now I have to carry and EpiPen at all times in case the hives spike and my throat closes. So next is a neuro? I guess it's necessary, but I was going to ignore it if it was just part of the lupus issue.