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Thread: Just Diagnosed. Any one else with numbness and tingling issues?

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    Default Just Diagnosed. Any one else with numbness and tingling issues?

    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.

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    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!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

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    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!
    Lauren

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    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

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    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!

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    Quote Originally Posted by mystiejm View Post
    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.
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    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.
    Diagnosed with Lupus - 22 June, 2010

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    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.

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    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
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    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!
    Mari

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