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potts77
04-09-2010, 10:37 AM
My left leg today as I tried to walk and do my chores around the house deiced to just go completely numb. I finished what I was doing.. Which took about a half hour ... and now it hurts. like someone is punching me in the pressure points by my hip. From my knee down it's still numb. Is this part of lupus? what's going on? I'm not freaked out I'm curious to why my body is starting to spaz out all of a sudden and sporadically too. My body deciding to shut down my legs and making the rest of my body feel like it's on fire is driving me nuttier than squirl turds. :wacko: So if anyone has any suggestions on how I can deal with all that's goin' on I would appricate it.

wenlady
04-09-2010, 10:47 AM
The numbness is telling you that you need to rest. I also experienced the same thing yesterday. But after a good nap and a good night's sleep it went away. Hope this helps

gina
04-09-2010, 10:55 AM
You need to tell your dr. i was having numbing on top of thighs and my fingers would go numb. its was part of fibromylia and they did an mri on my back an i have bulgde disc. and the nerver test going down my legs the nerves are moving to slowly which causes the numbing also. resting wont' fix it. call your dr.

potts77
04-09-2010, 12:54 PM
I'm seeing a nuerologist now. He is putting me through a BUNCH of tests. This Saturday I'm doing a two hour blood draw and this Tuesday I'm going to have an MRI on L/S spine. He's also worried that I keep gaining weight no matter how hard I work out or how good I eat. It's frustrating!
With the fibromyalgia is it genentic? My fathers sister has it and so does my father. So could it be that on top of everything else?

rob
04-09-2010, 04:54 PM
Hi Potts77,

I think it's safe to say your problems are neurological in nature, so a neuro is the right specialist to see. I have some of your symptoms myself. My right leg will go totally numb from the hip down. Although the skin has no sensation at all, I still have control of my leg and can "sense" it being there, so walking is not difficult. It's an odd sensation to say the least. But, I have also had it where all the muscles suddenly switch off, and down I go. I'm 6'1" and 200lbs, so it's a long way down, and I hit hard. Not fun. Although I was diagnosed with SLE in 2004, my numbness and muscle control problems are caused by MS, which I was also diagnosed with 1.5 years ago. Two for one, what a deal (NOT).

A person can have neurological problems (neuropathy) from Lupus, so it's definitely possible you have CNS problems caused by it. Most of the tests the neuro will most likely put you through are pretty easy and mostly painless, they are long and boring though. There is a nerve conduction test they can do that involves some tiny needles that give you a little zap, but the needles are so thin they are barely noticable, and the zap isn't much more than you will get from static electricity in the winter.

One good thing, I have noticed that most neurologists are pretty good at what they do, more so than your typical rheumotologists. Most Rheumo's seem the be the "problem children" of the medical world. It's hard to find a good one. I don't know alot about fibromyalgia, but we have many here who have been diagnosed with it, and hopefully they can help you with your questions about it. Another good thing, is that if it turns out to be a neurological problem, there is a wide variety of fairly effective meds available to treat these problems. If one doesn't work, or isn't well tolerated, there are plenty of others to choose from. I hope you get it all figured out, and good luck with your tests. Let us know how it goes.

Rob

magistramarla
04-11-2010, 01:42 PM
I just saw some docs presenting on CNS problems and on neuropathy in autoimmune diseases at the Sjogren's conference. I'll be posting a report on each presentation that I saw over the next few days, so watch for them. I hope that some of my info might help you.
Hugs,
Marla

potts77
04-11-2010, 01:45 PM
Rob I'm sorry that you are dealing with two missories at least you know. I was sitting doing my 2 hour bloodtest yesterday bored to tears... it lead to thinking.... maybe they wont find anything with the bloodtests or the MRI tuesday. What if they say I'm fine and I'm fat that's all there is and it's all in your head. I don't know why I'm freaking out and thinking awful thoughts (like there is nothing wrong)
Right now I'm feeling like there is fire going from my arms down to my finger tips and my legs burn from my butt to my toes. I really don't feel like myself. Like who I use to be.

potts77
04-11-2010, 01:48 PM
I will look for that posting Marla. It should be helpful. Thanks.

gina
04-12-2010, 10:12 AM
Let us know how the mri goes. my pain dr. did all my nerve test so i didn't see a neurologists. trying to save money. she also ordered the mri on me. which showed buldge disc on L3 an L4 an some other thing starts with an F can't spell it. I think that most of us with lupus have more than one thing wrong. I have fibromylia and arthritis. i also can't spell any more. lol brain fog is always there. good luck with all your tests.

potts77
04-13-2010, 04:26 PM
I wont have the results of the mri and the blood draw until friday, when I go see my nuerologist. That's okay... I'm kinda scared to find out. I'm scared they say your fine physically your just nuts. I'm gonna keep it short because I'm in so much pain I can't even see straight.

magistramarla
04-13-2010, 04:42 PM
If the MRI is normal, I've been told to ask for a skin biopsy. It's the only way to prove small nerve fiber involvement, which would point to peripheral neuropathy. I'm still working on those reports, but I heard a great presentation on PN in autoimmune disease and I even bought a book about it. I'll be out of town again until Sunday, but I'll be watching for your update on your results.
Good Luck,
Hugs,
Marla

potts77
04-14-2010, 07:21 PM
Today has been an okay day. I had something weird happen to me. My eyes decied to go all blury. It was like I was staring through a heat reflection on the road. Everyone was wavy. What could have caused this? If anyone has any thought I wouldn't mind to hear it. thanks

magistramarla
04-14-2010, 08:09 PM
Potts,
Please go read my post on Dry eyes. The optometrist mentioned that this blur is common and often goes unnoticed by docs and is under-reported by patients. I've had it, too. You're right - it's like a heat reflection, but it would happen to me while driving, while looking out over a classroom, or anytime. I think that it happened more often if my eyes were tired. Do you have dry eyes? If you think that you do, see an optometrist or an ophthalmologist and ask for a Schirmer's test. Systane eye drops help, and Restasis prescription is the next step.
Also, read my post on neuropathy!
Hugs,
Marla

potts77
04-15-2010, 11:21 AM
I'm going to your post on dry eyes right now . Thanks for everything!

mountaindreamer
04-16-2010, 07:20 AM
good luck with your drs. appointment today. Whenever new symptoms arise, we get worried, and rightfully so. Such a frightening time.

Please let us know the test results.

potts77
04-16-2010, 06:43 PM
OMG I've never been so happy to hear that "you have Fibro, you're borderline dieabetic, and that my spine has arthritis. He told me he wants me to go through a test with electroids to see if I TRUELY am dieabetic. That's why all the weight gain and no loss. He said the nuerons usely know first then the blood folows. Oh boy I'm so happy I can dance. He gave me a higher perscription for Lryica and that has seemed to help. For the first time in months I can actually hug my sons. I started crying. I can hug without hurting. I'm loving results. If it weren't for you wonderful people in here I don't know what I would do. I would still think I'm nuts for hurting and everything. Thank you all for steering me in the right direction.

gina
04-20-2010, 11:57 AM
I am glad you know what it is. I tried lyrca couldn't take it. my pain dr has me on tramadol three times a day and that works for my back pain and some of the other. my fibro is a mild case i have more problems with the buldge disc in my back and arthritis. now you can be put on right meds.

Bonita
04-21-2010, 05:17 AM
I have been a patient of a neurologist for years before i was diagnosised with lupus and myositis. I have had two serious back surgieries and have permanant numbness on the side of my one leg because of nerve damage. I am going to see him again this month because i will probably need more surgery on the lower part of my spine. I have bulging discs and pinched nerves and stenosis and arthritis in my lower spine and i often get numbness in my legs and feet. But i also have myositis which affects the muscles. Life is very interesting some days but it is the only life i have so we make the best of it. Hope that everything works out for you. Love and prayers Bonita

potts77
04-21-2010, 05:58 PM
Beautiful, thank you for your prayers and love. I'm sorry that you have to go through painful surgeries and pinched nerves bulging discs and all that yuckiness that you have told me. I am truly sad that you have gone through all this pain. I am fortunate to know that my pain in my back is arthritis. The MRI found that out for me. The Nuerologist hasn't offically diaogonised me with lupus... a doctor that doesn't know his head from a hole in the ground did... but he suspucts diabeaties and he says I for sure have fibromyalgia. gracias tanto para todo su amor y apoya. My spanish sucks.. I hope I spelled and translated it right.