I was diagnosed with TM back in early August, after they ruled out MS and Gillan Barre (sp?). I was in the hospital for 6 days receiving IV/IGG infustions and IV steroids to bring down the inflammation in my spinal cord. I also had a spinal tap in which the protein was a little high. I was taken by ambulance to a hospital that had an inpatient rehab. floor and stayed there for 9 days. I came home with a walker and continue to walk with one as I still cannot feel my feet. The numbness had gotten up to the middle of my thighs but I guess the infusion reversed it - lucky for me BUT I would like to hear from someone that is dealing with the same things. I also have excruciating back pain due to all of this - had a spinal fusion in 2011 at L5/S1. There was a cyst on my spine, so I had no choice. Could this be the reason I got TM? My neurologist is doing another nerve conduction study next Tuesday and she said I may need to go back in the hospital for 2 days to receive two more infusion treatments - YUCK! I guess I will blow up again!!! She also seems hesitant to give me pain medications but I really cannot function without it! Why is this???? I already take neurontin at night to help with the nerve pain and have tried Lyrica in the past but they did not work. Thanks for any words of comfort!!
Hi Cecile, I went through this last year. They found a lesion on my spinal cord. C3. I had function of my limbs , but pain on my shoulders, color bone, stiff neck. Pins and needles on my hands and feet. For a few months it seemed to calm down. Now in the last month or so the pins and needs are very strong. Especially my feet. I have neurontin but I am afraid of taking it. Not sure what good it will do. It doesn't seem that doctors have much knowledge about this disease. Thanks for letting me vent. I wish you the best. PHIL
Hi Cecile, FIrst of all, sorry for my spelling o grammar mistakes, but I am Spanish (Canary Islands).... I will try to summarise as much as I can:
May 2010- I stopped feelind my whole right leg; from my thigh down my toes...I felt absolutely nothing, but it didn't happen suddenly... it took nearly two weeks of strange feelings until the worst. Doctors didn't make an upper spine MRI,they did a Couple of brain MRI and lower spine, everything showed ok so they sent me back home saying they didn't know the matter...probably nothing bad. I spent at home 12 days with my feet up, until everything got back to normal.
After a couple of months I started feeling strange things like tiggling and burn in my legs and feet....I went to many, many........MANY doctors, but never thought in a neurologist, because all the doctors I visited said It was nothing to worry... they all thought the reason was stress...but I knew there was someting wrong.
May 2011- symptoms were getting worse until I got paralised from my belly botton all the way down... I couldn't walk.
Again, I didn't feel pain...I didn't feel absolutely anything, nobody did me an upper spine MRI...so no lessions showed up... they told me I had a spinal fusion L5-S1...thay gave me LYrica and many,many pills.... but no mejority showed up ( I lived lying on a sofa for all those months), so in October I went to a neurologist who decided to do me a upper spine MRI...and finally my lessions appeard D6,D8 and D9... It took me 7 months to be able to drive... but thanks God, now I can do a normal life.... there is hope, believe me, The only thing I notice is tiggling at night, but nothing else..... I must admmit this changes you completely, the way you feel about life.Even though I feel really happy for being able to do a normal life, I live full of fears because now I am having all sort of things done at Hospital because doctors are sure I have another illness that is not showing up.....maybe Sjogren...
The most important thing is to keep positive and full of hope...........I never lost my hope and never will.... at least try hard not to.
I wish you all the best!!!!!!!!!!!!