I have had numbness in my fingers and toes for months now and my Rheum. sent me to a neurologist for a nerve conduction study which came out normal. I have LUPUS and am taking prednisone... I couldn't stand the side effects from the Plaquenil so I was taking off of that and remained on a 15mg dose of Prednisone which he reduced to 10mg yesterday. He never mentioned anything further when I complained that I was still having the numbness.... help.... also been having frequent jerks in my arms, legs, etc. MS runs in my family so I am wondering if this is somehow related...
I can't tell you whether it's related or not but can tell you I'm at nearly the same point as you. My Rheumy has suspected Lupus for nearly 5 yrs now but other than a high ana titer, a low C4 and a history of autoimmune things nothing else has tested positive. So since I was having numbness in my left fingers and some jerking he sent me to a neuro. Saw him last Monday for a peripherial nerve test. No results yet.
But my Rheumy said he wants to look into MS as a possiblity. I am still wondering why he didn't just order an MRI? Have you asked about an MRI?
Hi I am new here, I found this post most interesting and thought maybe I could help alittle. I have had chronic fatigue, fibromyalgia for years. Last year contracted west nile virus that triggered (finally) positive testing for dx of lupus, also raynauds, and sojourens. Seen my rhuemy couple of days ago increased methotrexate hope it does something, anyway I asked her why I was having the jerking that had gotten worse especially if i am more tired. She said it was related to sleep deprivation causes chemical reaction of somesort in muscles. She said its nothing that will cause problems unless your like me and almost spill bowl of cereal. time to lay down and rest ("again"). Back soon.
Have numbness in feet and hands...thought I was having a stroke to be honest...I also didn't get an MRI...but I did have all the nerve testing and circulation testing...make sure that the both of you go to a cardiologist...for an artery studies...trust me...it will ease your mind about one thing...but still keep you in question about the numbness... I have it every day regardless if I sit or walk... PLEASE PLEASE don't let them pin Reynauld on you... unless you have ALL the signs.
I take a bunch of supplements. I take concentrated salmom oil, not flax seed oil. It is supposed to help the heart, lubricate the joints and have an anti-inflamatory effect. I take other things as well. Dr. is trying these first because I have reactions to so many things and she is afraid I will not take well to the harder drugs although she has assured me that sooner or later I will have to go on them. I can not give you brand names, and there are many, but I can tell you that I also take CoQ10 and DHEA. These have been touted in several studies to help stop the effects of aging and some of these debilitating diseases. I will be happy even if they just slow if down some.
I have experienced some numbness in hands and feet in general but it only usually lasts a few hours or mabe a day. For the numbness I would also suspect something like MS. I too wonder if an brain MRI wouldn't give you some answers. Might be worth asking your Dr. about.
On the path to being Dx'ed with SCLE (subacute cutaneous LE, which is the "intermediate" form of lupus) in the year 2000, I was getting a LOT of tingling and numbness up & down my arms and some in my legs. I was dropping things right and left. I thought I had MS, and I never suspected lupus (didn't know anything about it, really).
My new Manhattan rheumie did not think the numbness and tingling was unusual, by the way. He took one look at the rash and nodded his head at every symptom I'd written down. He did tests all over again (skin biopsy & bloodwork)---and gave me the conclusive Dx in less than one month---after eight-plus years of trying...
Plaquenil has helped me a lot---but I've stayed mild enough on it to not need anything more to date (other than pain relief & Fosamax). So maybe I'm not a very good judge of ongoing neuro-like symptoms, is what I'm saying.
Best wishes to you, from Vee (who broke THREE irons in one year---was that Freudian? or just the lupus-y numbness & tingling? )
Thank you all. I'm starting to get really frustrated from all this situation. Really.
The pain is unbereable!. Today I have a pain like a current electric wave on my hands especially my fingers!!!!and my toes...I hardly walk. THat's incredible. It does not worth living. You know, also today I held my oat jars and it fell from my hands!!!!!!!.Anything I touch with my fingers hurt me.
that's really crazy. I'm only 33 and ending my life being disabled.
Also, my hair is falling some. One by one. White hair also, so much at the age of 33???.
I've never seen anybody in my age with more than 2-3 white hairs. I think I have 30 white hairs. Also, very dry hair. Is there anything to do against it?
My vision getting worst following each attack. Is there any way to stop that?
I think it's because people with so much pain don't absorb nutritions very well.
Hell, life don't worth living like that. 33 and disabled.
What's gonna be with me? will I ever be able to go to work and function at work?. I have a job which I need to stand 8 hours and move light stuff(cloth and glass). Don't know if I could continue.
Last edited by Iwantacure; 09-12-2004 at 02:24 PM.
You really are having a tough time. Not too long ago I was sitting at the kitchen table with fresh prescriptions of pain killers and muscle relaxers wondering how long it would take to relax my heart into just not working if I took them all. Constant pain is horrible. I didn't want to live that way either. Just about then I found a new Dr. who helped me some and then ran the tests to find some answers. I really was thinking I was crazy and who wants to live when they can't even trust themselves.
I wasn't crazy though and the pain was not my immagination. It was very real and the new Dr. found out why. I still have some but not anywhere near the level I did have and really, just having an answer makes it easier to bear. Hang in there Iwant. There has to be an answer for you too. I will pray and so must you. Then leave it and trust God will provide an answer be it through a Dr. with a dx for you or just unexplained relief from the pain. I know I get preachy sometimes but each time in my life I have reached the end of my own ability to deal with things God has come through. Trust that he has an answer for you too. I know he does.
Thanks. Also, I've noticed that I hear less good? Does this debilitating disease gonna make me use hearing aids?. My vision is getting worst after each attack and everyday anyway when the pain is less(relatively) it gets worst.
People asked me if I hear well, then I felt that something is wrong with me.
Glasses, earing aids(for the future), dry hair(it gets white! at the age of 33) and constant pain - electrical constant pain/stabbing pain.
This does not worth living at all. I wish I was strong enough to end my life.
Last edited by Iwantacure; 09-13-2004 at 08:43 PM.
I saw your post in which you mentioned fibromyalgia. Is this ALL you've been Dx'ed with so far? Lupus? Anything else?
I ask because you mentioned having vision loss and hearing problems. Have you had an MRI? I'm no doctor, but the problems you've cited certainly bear a really thorough check, and not just for lupus or MS.
If I missed earlier posts from you and have just written something unbearably STUPID, please forgive me. I've been in & out of town (family problems)---and I'm not sure I was following your story well enough. But I sure do send you my best. And I want you to drp us a line back, OK? I'm worried about you and want to be sure you KNOW you have ALL OF US on your side.
Hello Veej, thanks for your reply. Well, I've done a blood test and they saw that I have anemia/a little low white blood cells(the doctor didn't really understand why, she put it for anemia, I don't agree with her). Now I see unexplained rashes on my hands. THat is weird. I don't remember causing that by washing with soap.
I'm going tomorrow to my doctor to tell him I need to see a reumtologist urgent.
I cannot walk anymore because of so much stabbing pain in my legs together with stabbing feelings of needles? in my hands and fingers.
So I was not diagnosed with fibromyaglia yet.
Last edited by Iwantacure; 09-14-2004 at 08:42 PM.
Let us know how you make out, OK? I'd press for an appt., too, with what you are describing (hearing, vision, tingling and severe pain in hands and feet, rash on hands, etc.) Let us know how you are making out, OK? Someone needs to figure out SOMETHING for you, that's for sure.