diagnosed with Lupus 6 yrs ago now having MS type symptoms?

[melissak89]

6 yrs ago I was dx with Lupus after the birth of my last child. Two years ago I had a "flare" that involved the right side of my face ( mainly my mouth) "drooping" I had a work up to rule out a stroke it was thought that I may have had a TIA related to inflammation from Lupus. The drooping almost completely went away. Then on Sep 1st I woke up with the right side of my face drooping again this time much more pronounced and my right arm feeling very heavy and I was having difficulty grasping things. I called my neurologist and had an MRI done 3 days later it was "normal", the drooping continues and now I have started having sharp electric type pains shooting through the lower right side of my face. Over the past 1 1/2 weeks I have started having pains that started out shooting from my knees down the backs of my legs to my feet. That pain has now been in random places it shoots down the backs of my thighs all the way down to my feet, with numbness and tingling that is intermittent. Yesterday, I started having what feels like a "charlie horse" begining to start but it feels more like the muscle is quivering along with my right leg feeling like the muscle is extremely tight in the calf and thigh. I have also started having difficulty with my balance. I do not feel dizzy or anything but I am stumbling a bit and have nearly fallen several times. It almost feels as if I am being pulled backwards or that I am standing up in the middle of a small boat trying to balance? My neuro had me get labs drawn to make sure it was not my Lupus trying to flare up and she also started me on flexeril she because she did not see much curve in my c-spine and sometimes patients who are having spasms appear that way. Hope to get labs back tomorrow but I am freaking out just a bit! Anyone else have similar symptoms? Any suggestions? Sorry for the book.

[anon07072023]

They also thought that I had Lupus, but it turns out I have systemic scleroderma.  There are a lot of cross over symptoms for the autoimmune diseases.

[anon07072023]

I should also say that I have lesions in my spine as well.

Take care,
Kelly

[melissak89]

Thank's so much! I have been feeling a bit coo-coo :-). I see the neuro and rheumatologist this week will see what happens. Again thank you!

[anon07072023]

I think with MS protocol they do the MRIs at certain slices & with the gadolinium. Also, they need to follow thru with other MRIs if the brain MRI doesn't necessarily show something, & you have symptoms that could be related to spinal lesions.
http://c.ymcdn.com/sites/www.mscare.org/resource/collection/9C5F19B9-3489-48B0-A54B-623A1ECEE07B/mriprotocol2009.pdf  

I went to a neuro for a year & a half then switched to an MS Ctr. They reviewed my MRIs and said the radiologist & the neuro missed 6 lesions in my brain, plus 3 T1 black holes. I should have already had the diagnosis of MS.  Don't let them make you think you're coo-coo crazy. If you're having symptoms, it's them that's not doing their job. You have to keep on it and if you don't get answers, you may have to go somewhere else if you can.

With the electric shock type feeling, it's neurological, so I would imagine you could have it at other times other than just when your head is bent forward. I would get zaps all the time on the back of my calves.

Good luck to you.  

[melissak89]

My neuro is general neurologist/sleep medicine and she is an assistant professor of neurology at a large teaching hospital. I was sent to her initally because of the weakness in my face and I was having issues with my memory. I have no idea about the protocol used for the MRI other than I had contrast. The MRI was of the brain only. What is MS protocol? My neuro mentioned doing another MRI so she could see more of my c-spine because she thought my c-spine looked as though it didn't have much curvature and it was possible that it could be causing me to have spasms? Although I have never had any issues with my neck no trauma or anything like that.
Usally with TIA symptoms begin to resolve but this has been going on now for almost 3 weeks and for the most part getting worse.  I worked yesterday and nearly fell down a flight of steps because I got so off balance and my legs felt so heavy. I stumbled several times yesterday it was as if my right foot was not coming up high enough and the toe of my shoe would catch the ground. I was off work today and was so wiped out, I couldnt get out of bed till this afternoon. During the night last night I woke because all my left leg jerked up violently off the bed. It scare the heck out of me! It only happened once and I was able to go back to sleep. I spoke with my neuro yesterday and explained all the symptoms I was having, she told me she was having a hard time putting it all together and that she wants to see me on Tuesday.....I felt like she thought I was crazy when she said she was having problems putting it all together :-/ Today after rest the electric shock type pain is better. I did read a bit about Ihermitte's and that sounds exactly like the shocking type pain I am having but I notice it at any given time can that occur when you do not have your head bent forward? Thanks so much for your input :)

[anon07072023]

Is your neuro an MS specialist? Was your MRI of your brain done using MS protocol and did you have a c-spine and a t-spine MRI as well?  Many of your symptoms can be related to lesions that could be in those areas.  Many of the things that you mention don't sound like typical Lupus symptoms. However, I know that Lupus can present neurologically as well.  The electrical shocks sounds like lhermitte's. They've already ruled out having a TIA again?

Take care,
Kelly