[Wantmylifeback]

Up until about 11 weeks ago, I was a very healthy 50something male that worked hard (45+ hours a week). My job is physical so I'm in fairly good shape or so I thought. We had gone on vacation, had a wonderful week but I got a bad respiratory infection when we returned. I ended up missing a few days of work (which is unheard for me personally). The day I went back to work, that evening I was at home. I was sitting on the end of the bed leaning over to remove my shoes when suddenly; my right arm and right leg went into a horrific spasm. The both locked up straight on me and it last about 7-9 minutes before it subsided. I chalked it up to my potassium (low levels can cause muscle spasms) so I bulked up on bananas. About 1 week later, I had the same type episode but this one was a bit worse and lasted longer. I went to the ER on this one. The episodes began happening a lot more often. I also began having a severe burning in my left trunk area (only this one spot) I'm on my 2nd neurologist. She is also clueless (the first one sent me to her because he was clueless). The diagnosis of MS was thrown around but I have no lesions on MRI's. I had an normal EEG also. My symptoms now are; from the waist down, I have numbness and tingling about 75% of the day. My pinky fingers tingle out of the blue. I'm in pain at about a 7-8 scale all the time now. I can't drive a car and haven't for 11 weeks. I'm on Neurontin and Baclofen. I still have no diagnosis. My quality of life has gone from great to WTH just happened to me? I wake up with my legs numb. I get heat in my right side and now it goes all the way from my trunk area down to my foot. I have also lost feeling in my toes on both feet. The only thing the MRI's are showing is a small syrinx in my T spine and my C spine (even smaller one). The last neurologist swears this wouldn't be causing me these issues. I'm open for any input anyone here has. I just want my life back again. :/

[Lara]

Welcome to the NeuroTalk Support Groups.

I'm not a doctor but when reading your message it made me wonder if your doctor has mentioned Guillain - Barre Syndrome at all?

http://www.mayoclinic.org/diseases-c...n/con-20025832

I'm not saying that's what you are dealing with but it is worth investigating considering what you've written here.

[Wantmylifeback]

Originally Posted by Lara

Welcome to the NeuroTalk Support Groups.

I'm not a doctor but when reading your message it made me wonder if your doctor has mentioned Guillain - Barre Syndrome at all?

I'm not saying that's what you are dealing with but it is worth investigating considering what you've written here.

Thanks Laura. My wife works with a nurse that actually mentioned this syndrome a few days ago. She had a relative that had it so she was comparing symptoms with me. I think its worth mentioning to the physician. Sadly enough, anything I mention to her, she tells me to stay off the internet (nice huh?). I'm also going to get a 2nd opinion at the Cleveland Clinic that I made myself. There has to be something wrong as none of this is normal. I did do 3 days of at home IV steroids early on and it didn't do anything for me.

Regards,
WMLB

[Lara]

I had a friend who was basically struck down almost overnight with Guillain-Barre (was a very long time ago) so when I read your post it sounded so familiar. She was treated very poorly in hospital and I found it very disturbing that it took weeks and weeks to diagnose her correctly and that wasted so much time unfortunately.

Of course, it may not be that at all, but worth mentioning especially considering you had a respiratory infection of some type prior to this starting ... yes definitely. I would.

Others here may have more advice for you.

I hope your visit to Cleveland Clinic goes well and you get some answers.
The sooner the better I would think.

[Kitt]

Welcome Wantmylifeback.

[Wantmylifeback]

Thanks Kitt. : )

[Wantmylifeback]

Update: my repeat MRI showed a syrinx from T2-T8 (gets widest from T7-T8). Also, I have a spinal Dural AV Fistula. I'm now being sent onto an neurosurgeon and am having an MRA and an angiogram as soon as possible.

I guess I can rule out Guillain-Barre at this point. I'm just glad something finally showed up, now maybe I can have a plan to get fixed if possible.

WantMyLifeBack

[Lara]

Thanks for posting an update.

I'm so glad you're getting some answers. I think the worst thing sometimes is just not knowing what is causing the problems.

Hopefully your Neurosurgeon will help get you back on the road to recovery.

take care there.