PDA

View Full Version : Just Diagnosed. Any one else with numbness and tingling issues?



mystiejm
12-01-2010, 06:54 PM
So, i was just diagnosed with lupus. After my last mri was normal last Feb., I started doing more research and found out that even thought I dont have the butterfly rash, I have a lot of the symptoms of lupus. Finally saw a rheumy(who was terrible) but she ordered blood work and my SM anitbodies was positive. I was put on plaquenil. ALL of my symptoms make sence now except for the constant numbness and tingling in my hands and feet, tingling in my upper back, sometimes my lower back goes numb, sometimes my toes go numb(I have raynauds but it does not seen to correlate with that), and sometimes the side of my face goes numb. Does anyone else have that??? What causes it? I had a nerve conduction test and it was normal. Thanks so much, Mary.

tgal
12-01-2010, 07:15 PM
Hi Mary and welcome to WHL! We are actually discussing this in a couple of other threads. Yes, this can very well be Lupus related. I have numbness and tingling in my hands and feet, one side of my face (worse by my mouth and eye). Lupus can actually affect almost any part of your body but brain, nerves and organs are some major ones.

Others will be around with more details or I will give more when I come back later but I have to run right now. Once again, welcome aboard and we are glad to have you with us!

red246
12-01-2010, 08:39 PM
Hi Mary! Before I was diagnosed I would have horrible periods of the numbies as I called them. Hands, feet, legs, spots on legs, back, face, stomach, etc....I still get it sometimes especially in hands & feet. My nerve tests were normal also. I was told that it was just something I had to deal w/. Good luck!

magistramarla
12-02-2010, 11:06 PM
Hi Mary,
Yes, the Raynaud's Syndrome does correlate with the neuropathy that you are describing. I have Sjogren's, along with a few other AI issues. I have the same numbness and tingling that you are describing. Sometimes, my toes and feet are so numb, I can barely tell how hard I'm pressing on the brake or accelerator, so it's scary to drive.
Many people with SJS complain that it never shows up on nerve conduction tests. Those tests only show large fiber neuropathy. Small Fiber Neuropathy will sometimes show up on a punch biopsy of the skin, which most docs don't seem to be willing to do.
I think that they prefer to ignore it or tell us to just deal with it. It's not very easy to deal with, is it?
Hugs,
Marla

mystiejm
12-03-2010, 10:18 AM
Thanks everyone. I guess I am confused because when I asked my rheumy about the numbness she said that lupus does NOT cause that and only vasculitis does in rheumatic diseases. I do plan to look for another rheumy.
Its helps to know that I am not the only one out there with those symptoms. I will look up more about the small fiber neuropathy, thanks. I have a lot to learn about lupus. I thought I had MS for years so I know alot about MS but not much on lupus. I am glad to be here and learn from all of you!

SandyR
12-03-2010, 02:25 PM
Thanks everyone. I guess I am confused because when I asked my rheumy about the numbness she said that lupus does NOT cause that and only vasculitis does in rheumatic diseases. I do plan to look for another rheumy.
Its helps to know that I am not the only one out there with those symptoms. I will look up more about the small fiber neuropathy, thanks. I have a lot to learn about lupus. I thought I had MS for years so I know alot about MS but not much on lupus. I am glad to be here and learn from all of you!

If I had a dime for everything a doctor told me couldn't be related to what I already knew is wrong with me, I would be a very rich woman! It sounds like a new doctor who is more familiar with Lupus and AI issues may be the right thing for you.

Linda From Australia
12-03-2010, 07:01 PM
Hi Mary and welcome to this site. I also have periods of numbness in my hands and feet, but haven't really given them much thought though. I did tell my Rhummy about it but he didn't say anything. Let us know what you have found out in your quest for answers to make life a bit easier for you.

vfelus
12-12-2010, 11:16 PM
The numbness is in my hands. Then while sleeping what ever part of my body I am sleeping on goes numb. Its awful! To wake up and try to move or turn is really hard.

debbie-b
12-13-2010, 05:39 AM
Same here, I have numbness. It is on the right side of my face, hands, feet and always on my left shoulder blade.
Yesterday I had a new " location", my left forearm felt like there was a long hair on it, I have tried to remove that long " hair" about 30 times, every time I touched that spot it felt like a little zap.
My numbness does not feel like falling asleep tingeling, it just feels numb.
My rheumy said the same thing, it is not lupus related, BLAH, BLAH, BLAH.
I just now, it is very annoying.

Debbie

tgal
12-13-2010, 07:32 AM
LOL@ Blah blah blah

I am not sure which is more irritating. "It's not lupus related" or "it's just a lupus thing". I swear they should all have to live with it for a week and they would be such better docs!

debbie-b
12-13-2010, 02:18 PM
LOL@ Blah blah blah

I am not sure which is more irritating. "It's not lupus related" or "it's just a lupus thing". I swear they should all have to live with it for a week and they would be such better docs!

You are so right, both of these phrases are irritating and like you, I have heard both.

Debbie

Angel Oliver
12-13-2010, 02:22 PM
Hello and welcome to the forum.Yes unfortunetly i also have the numbness n tingling sorry you have too.I have also not got the 'lupus' label yet...they took it off me so i know how horrid it is.Hope you have settled in ok,everyone here are lovely...so feel free to ask anything we are here to chat n help always.

love
Amanda.xxx

OHMEOHMY
12-19-2010, 06:58 PM
did the dr. do an ANA?
if so, what was the titer?
if you in fact have lupus, you've probably been plagued for year w/strange medical problems/symptoms. i would like to know what lupus symptoms you have, aside from the CNS symptoms you describe.
lupus can attack any organ, or organ system, in your body. CNS involvement is not rare, but tricky to both diagnose and treat.
have you has a brain MRI, and did it show lesions?
BTW, the butterfly rash is truly not always butterfly shaped or even there at all. sometimes it's simply a redness on your face, chest or even upper arms. it can come and go, sometimes smoothe and flat, sometimes raised.

mystiejm
12-22-2010, 03:14 PM
No, she didnt check my ana, but a year ago it was done and it was 1:80. recent blood work showed Low positive rheumatiod factor, Sm antibody positive, something for inflammation was pos, and I cant remeber the rest. I have had 2 mris done, one in 2008 and one in Feb 2010,(both with contrast) both normal. My symptoms started 7 years ago with chronic UTI's. intersitial cystitis, pleurisy about 2 times a year, joint pain in my hands and stiffness in hands, 3 miscarriages. then in 2008 I rapidly got worse with numb toes, then raynauds, then numb and tingling in hands and feet, lots of nerve pain with it, nauseua, muscle spasms, trouble talking. I was better for a little while till Jan this year and got chronic headaches, numb in face and back, joint swelling and redness in thumbs and toes, for about 4 months my scalp was red and hot and I lost tons of hair(my scalp was also sore), pain in face and cheeks(very sore thought it was tmj but told it was very mild tmj), I also get a lot of infections, like 5 mastitis, and kidney infections.
Besides the rash on my scalp, I have never had a rash on my body that I can remeber. I am hoping the plaquenil helps, been in it for 3 weeks and thankfully have not had any major side effects.

Hunniebun
12-22-2010, 03:30 PM
I get numb feet a lot and sometimes numb hands. That hasn't been addressed yet and I am waiting to see my 3rd rheum.

tgal
12-22-2010, 05:03 PM
I get numb feet a lot and sometimes numb hands. That hasn't been addressed yet and I am waiting to see my 3rd rheum.

That much be a common thing to ignore, Hunniebun. Mine igored it too and I hear it from so many