tingling

If that is the only symptom you have, it may not be Lupus. Low ferritin or low potassium can also cause that, as well as many other things.

Thanks Sandi. I am holding fast to my belief (fervent hope) that my ITP 15 years ago was not the first stage of Lupus. I think the tingling has been there in the background for years but it didn't hurt and didn't get worse, so I didn't worry about it. It's really ramped up in the last three weeks.

I work at a school for adults with developmental delays -- it is the third round of scabies in a year and a half, so I have been very aware of all the tingles lately. I have not gotten scabies from the students so far (knock wood). My husband is reading "The Blood Sugar Solution" and we went dairy and gluten free a few weeks ago. I wonder if the decrease in my general inflamation has cleared the stage for neuropathy to be front and center? It is very strange.

I am comforting myself with the idea that if this was parasite-related, this level of movement would probably have shut down my organs by now. So it's probably neuropathy.

My primary care physician appointment is next Monday. I will keep you posted. Thanks for listening!

The next step would be to see a Neurologist and have an EMG. I've had several of them. Neuropathy can be idiopathic. I have it but it comes and goes and is most likely linked to Lupus inflammation.

Good luck! Keep me posted.

I've had tingling in different body parts (mostly knees/legs and arm) for almost a year now. I don't know the cause and I'm hoping it's just a result of prolonged lack of sleep (15 month old baby). The neurologist said it often occurs with people who have an elevated ANA. If it doesn't go away after I'm sleeping through the night I will go back for help.

Hey there Giselle! 15 months old already! Wow time flies. She doesn't sleep through the night yet?

Hey Sandi! How are you? It's been a while! She still wakes once or twice. I haven't slept more than 5 hrs in a row in over a year (not complaing though,she's a great baby). My first didn't sleep through until she was weaned so I think we are close to ending the breastfeeding. My platelets are still great (2 years remission now). So grateful. I just wish I could figure out this tingling stuff.

I'm okay. Hanging in there.

Good news on the platelets! I think you should see a doctor about the tingling.

my neuropathy is idiotic. I mean idiopathic! :laugh:
Sorry, had to make that comment, just couldn't pass it up! Though I think my neuropathy is quite idiotic! Just something else to handle. Praying so anyway!

I've seen my family Dr many times, a neurologist a few times, and a rheumatologist that I've been going to since I was diagnosed with ITP. I had an MRI. My issues don't seem to be ringing bells with anyone so I have to take that for what it is rather than driving myself nuts searching the web for answers which are never there. In my mind, the most likely cause would be lupus because some of my bloodwork was heading in that direction but I find even the lupus foundation websites (Canada, US, Ontario, etc) are confusing when it comes to symptoms. Oops, that was a bit of a rant!

Giselle:

My story with neuropathy is about the same. Two neurologists, one hematologist and one rheumatologist all denied it could be Lupus-related. After I started to look it up, I found tons of articles that link neuropathy to Lupus inflammation. Lupus symptoms can appear long before blood work confirms it. It happened to me.

Gretchen:

Good to hear from you...I always wonder how you are doing.

yes, unfortunately I have that in the back of my mind - that lupus can take a while to fully "appear" but I'm hopeful of course that it doesn't happen. I thought the lupus tingling would be caused if lupus targets the nervous system/brain. So confusing.

Lupus neuropathy can also be related to inflammation of the peripheral nerve endings in arms and legs. There doesn't have to be brain involvement (which I am glad to know). That is what I have, and it gets worse when I'm in the sun or when I am cold. I have the numbness and tingling in the sun and burning skin when I am cold. Weird. For a while, I had Cubital Tunnel (nerve entrapment in arms), sort of like Carpal Tunnel but different nerves are affected. That eventually went away and the neurologist said that the nerves became "untrapped", probably because the inflammation went down. Oddly, my dsDNA was at its highest when that was going on.

peripheralneuropathycenter.uchicago.edu/learnaboutpn/typesofpn/inflammatory/vasculitis/lupus.shtml

www.qualityhealth.com/pain-articles/lupus-nerve-damage

Thanks for the links, Sandi. I had some kind of blood test for inflamation that was fine but I can't remember what it was.the rheumatologist told me to come back if I felt I needed to but I was hoping to at least get the sleeping improved first. The tingling isn't too bad.

Probably SED rate? That's a pretty basic inflammation test. I'll tell you what though, I've had some of my worst symptoms when the SED rate was in the normal range.

Sandi - I'll have to look and see what it was. I get the reason for doing all of these lab tests but it seems there is so much that still needs to be figured out. I think sometimes we just can't explain what is going on with our bodies - they are too complex.

And sometimes it takes a long time to put all of the pieces together. Hang in there.

CRP is the main blood test for inflammation.

It is, but most srticles I've read state that it's not usually evelated in Lupus patients. I've read a few that contradict that though. Mine has always been normal. I'm rarely tested for that; they usually do the SED rate.

Hi Sandi & Melinda,

I've found your last year's worth of posting to be very helpful! Especially the link to Neurology Now:
journals.lww.com/neurologynow/pages/default.aspx I will check out that publication!

I still don't have answers to the tingling -- which is really more twitching than tingling.It's more like small, uncordinated muscle spasms, not painful but pretty constant wriggling & wiggling going on in my calves, less in my forearms, back, shoulders -- biazrre but also sometimes fluttering sensation in my anus! No lack of muscle control but sensations of movement. But it's not just sensations, my calves are actually twitching & moving with the spasms.

My GP referred me to a pretty good neurologist whom I like. He seems to be doing a wait & see with me for the last 6 mo. I had EMG and my neurologist said my muscle message conduction looked good. i'm not sure if it is a dead end or too early to see damage? He referred me for an MRI. MRI that found one 3mm T2 lesion in left side of my brain. He says he wouldn't diagnose me with MS based on those two things. I think we are playing count the symptoms for now. I don't think I have MS, I also don't think my twitching is normal.

Mendnhm's post about the buzzing -- thinking my cell phone is vibrating when I don't even have it in my pocket -- happens to me all the time!

I am on 200 mg Gabapentin (Neurontin generic). I didn't know about the weight gain side effect but have definitely seen it! My weight has been slowly creeping up without much difference in my eating or exercise habits! I was on 600 mg to start but was REALLY REALLY laid back and drowsy. I have tapered down to 200 mg right before bed because it lets me stay asleep at night but also lets me have complete thoughts during the day! I'm not sure it is doing much for the wiggles in my extremities. I hear Neurontin is also used for Bipolar disorder? I thought maybe it just made me care less or worry less about what is going on?

I like my Neurologist but wonder if I should be pressing my GP to refer me to a Rheumatologist -- coming off the Prednisone post Spleenectomy for ITP I had what they told me were Lupus flares (persistent fatigue, mouth sores, body aches, facial rash, hair loss, hives, joint pain, and recurring nosebleeds). I was followed by Rh for a few months and then it all resolved and I haven't had anything that looked like a flare since then -- unless this is one?

That's hard to say. The symptoms of Lupus can be anything and everything. It couldn't hurt to see a Rheumatologist for some blood work.