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Old 03-17-2006, 01:18 PM   #1
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camilledwells HB User
misdiagnosed (lupus or ms)

16 years ago my symptoms started. Long story short was sent to the Mayo Clinc and told they were 75% sure I had Lupus. Pred. and Plaq. for many years. Still had problems so mentally I had to change b/c I was starting college and didn't want to be sick anymore. ok I know you can't change being sick, but I was a teenager and thought I could. I stopped all meds (after decreasing of course) and quit therapy, tried to be happy and do everything. I really did feel good for some time. Fast forward to today after many drs visits and tests that always come back normal (sometimes you just feel crazy). Recently I have been falling. It just seems that my hip just gives out and down I go. Now this jerking or tremor has started in my hip/leg 20 hours a day(or close to- on and off) Its driving me crazy. So I went to a new dr to get a fresh start (reum.) He says I have mayofacial pain syndrome and loads me up on drugs (I have a 2 yr old and there is no way I can take all this med.) He says I'm falling due to pain and starts me on pt (which ends up being massage therapy) so I like going to therapy but is it helping no! I am even walking with a cane so I won't fall and get hurt worse. So I asked to be sent to a neurologist and I'm going Friday. But my question is --- Does anybody out there have similar symptoms, I am getting nervous, my dad has ms and I'm begining to wonder if I've been misdiagnosed all these years. Any input would be great! THanks

Camille

 
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Old 03-17-2006, 01:25 PM   #2
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dwallech HB User
Re: misdiagnosed (lupus or ms)

I am glad you will be seeing a doctor. I was diagnosed years ago with connective tissue disorder, then 5 years ago with mixed connective tissue disease, had seizures, now two ministrokes and now they are leaning toward MS. I have tremendous pain in my legs, trip etc. I just got out of the hospital and I see the neurologist in a month. Let us know what you find out as I think these immune problems are interelated. I am on Tramadol which helps my leg pain to make it bearable. We are here for you and I would like to know as I am hunting answers as well. Take care and hope this board helps as it is informative and provides a lot of support!!!!!

 
Old 03-17-2006, 01:29 PM   #3
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Re: misdiagnosed (lupus or ms)

Thank you! I am taking Lyrica and I have had great results with the pain in my legs and hip. I used to cry when anyone touched my hip and now I don't. It made me a little light headed the 1st 2 days but that went away. Its expensive but I really like it. I'll keep you posted on what the doc says!

Camille

 
Old 03-19-2006, 06:33 AM   #4
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suziewong HB User
Re: misdiagnosed (lupus or ms)

Hi welcome to this sight well have to tell you its the other way round for me i have been getting treatment for M.S for past 10 years since my last daughter was born she was 10 weeks early due to my kidney disease,i have since been in and out of hospital on IV steroids to help my symptoms but never stopped the pain in my legs,Now doctors seem to think i have systemic Lupus,I have also been diagnoised with sjogrens.But M.S and Lupus are so much a like the only antibodies i have are SMA and my CSF is posative.Although CSF posative bands is normaly M.S,
I do hope you get sorted as it can be so stressful not knowing,
SO GOODLUCK AND KEEP US POSTED
LOVE SUSAN X

 
Old 03-21-2006, 09:30 AM   #5
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armslee HB User
Re: misdiagnosed (lupus or ms)

Symptoms for both diseases can be very similar. My neurologist has just recently cleared me of an MS diagnosis.

Get a Brain MRI and possibly one on your neck. If they see any lesions on your spine or in your brain then it is most likely MS. I have never had lesions and thus we are exploring Lupus now.

Good luck with the appts and keep us posted!!!!

 
Old 03-22-2006, 10:53 PM   #6
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suziewong HB User
Re: misdiagnosed (lupus or ms)

Hi i have had a MRI on both my neck,head and spine, Also alot of other scans which one was done with radioactive stuff injected into me and a full body scan,As doctors were looking also for sarcoidosis but only things seen were a cloudy patch under my breast and empty sella symdrome in my head,The doctors have been saying central demylination but unsurs of which one,But have been treating me for M.S for 10 years now,Also sjogrens that i have.I also think as my optic discs are getting worse swelling and now leaking also my cf having bands also delayed visual evoked potentials that is why M.S was first diagnoised,but as also of other symptoms are coming along lupus looks more like it.
thanks for all your infomation anymore ideas would be taken into account.
susan

 
Old 04-18-2006, 12:00 PM   #7
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camilledwells HB User
Re: misdiagnosed (lupus or ms)

OK so here is where I stand. MRI is clean blood work good except b12 level is 100 which is low. Every other test is clean but I'm still falling and now when I lay down to go to sleep and close my eyes the room spins. My vision seems a little blurry. I stumble so much. and I'm getting scared b/c they can't find anything. Anyone else out there have any ideas?

 
Old 04-18-2006, 04:24 PM   #8
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Re: misdiagnosed (lupus or ms)

camilledwells, I know being anemic can bring on "unexplained neuropsychiatric symptoms". That was the exact phrase that was printed out on my labwork when it kept coming back showing chronic B-12 anemia.

I don't know whether there are specific tests to help determine WHY someone is anemic, though. I've read long lists of possibilities. Maybe a hematologist would be a good bet? I hope others can chip in, too. Best wishes, Vee

 
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