Neuropathy

Hi guys! It has been a while. I am so glad to see you guys are still here. It's so great that you devote your time to all of us in need.

I will just give a brief reminder of my issues. So I was diagnosed with ITP in 2007 and then started developing symptoms of lupus after like joint pain and hair loss. I have been on planquiel since 2008. My blood work has never confirmed lupus I have only had a false-positive syphillis test. Back in 2011 I had burning feet and numb feet for like a month and then it went away. Just recently I have been getting tingling in my back. It started just on the left side but has started going to the right. It is very sporadic. Sometimes I notice it and others I don't. My doctor has referred me to a neurologist but of course I can't get in till the end of January. I guess I was wondering if anyone else has had neuropathy symptoms. Does this sound like anything in this relm or am I dealing with something else, possibily more serious.

Also, if this is neuropathy of some kind and is related to lupus will the symptoms get better after flare and go back to normal or is there permenant damage?

Jamie:

Neuropathy can be caused by Lupus inflammation. I have it, and several others that I know with Lupus have it. When it began for me about 6 years ago, it hit out of the blue one day when I was in the shower and went on for months. My arms and legs felt like they were being stung by bees. I thought I'd have it forever. At that time, all of my Lupus inflammation levels were high.

Anyway, it did simmer down and now comes and goes. I have lost a lot of feeling in my feet over the years and I lose my balance a lot. Anytime it is hot or cold, my arms and hands go numb. It's been fairly progressive but did not progress as fast as I feared. It differs for everyone, I suppose. It can cause permanent damage if it's bad enough, but treating can help to slow it down.

Only the Neurologist can tell you for sure if that's what is going on after they do some tests.

Thanks for your insight. I am afraid the more I think about it - it's MS. I guess this will just be another obstacle with the many others I have to manage and live with.

Thanks,
Jamie

Jamie - that idea really scared me too. I had a brain MRI and a few EMG's before they decided it was Lupus causing it. I almost ended up treating with Cytoxin; I had an aggressive Neurologist. I didn't though because it began to subside by itself.

Let me know what happens, ok?

Hi Jamie. I have neuropathy. The symptoms started shortly after diagnosis of ITP. It felt like there was a piece of cloth right where my toes bend. It was weird. The tingling and shooting pains didn't start for a couple of months. The stabbing mind distracting pains started shortly after that. At first I was told that it was unexplained. Recently they are trying to tell me that I have sugar issues. My AC1 or A1C, forget which order isn't to high though. Didn't realize it could be part of Lupus, or MS! I'm curious to see how it goes with you.