Lesionaire
08-13-2006, 09:54 PM
Hi everyone. Looking for anyone one else with this mystery.
Since 1992 I've have MS symptoms, Loss of vision, numb, tingly r foot and hand, extreme fatigue, severe muscle spasms/cramps in r leg and spine/neck,,,2003 lost vision, had MRI showed 2 lg lesions and many smaller ones, periventricular and subcortical. R hand showed CNS problem, not carpal tunnel and had a pos VEP for optic neuritis. Started Copaxone (RRMS) in 2003 still taking it along wth baclofen, zanaflex and klonopin which does help spasms. Last yr IVSM for vision loss and r leg paralysis. Decadron injections in both feet for nerve pain, finally alcohol injection in r foot to kill nerve-decadron didn't stop pain.
My question- neuro's blood tests (every 6 mos) twice showed elevated WBC so he sent me to specialist, body ct scan showd enlarged lymph nodes in chest.
Neuro said maybe I have sarcoidosis not MS. I know sarcoidosis mimics MS in many ways, biopsy showed Sarcoidosis in lymph nodes, no where else. I don't know if it will even be treated with steroids cause it doesn't show in lungs or any other organs.
I don't want both, also don't want to go back to the way I was before meds- spasms so bad I have scoliosis, DDD and disc bulges, my r leg would be a wooden,painful, stiff leg again, Copaxone I wouldn't miss, but I've had no new lesions since starting it. - only one flare up treated with IVSM in 3 years.
I also don't want brain biopsy to see if lesions are neurosarcoidosis or MS.
LP's came back clear.
I'm confused and a bit scared right now.
Any advice, experience would be greatly appreciated!
Thanks,
Debbie
Since 1992 I've have MS symptoms, Loss of vision, numb, tingly r foot and hand, extreme fatigue, severe muscle spasms/cramps in r leg and spine/neck,,,2003 lost vision, had MRI showed 2 lg lesions and many smaller ones, periventricular and subcortical. R hand showed CNS problem, not carpal tunnel and had a pos VEP for optic neuritis. Started Copaxone (RRMS) in 2003 still taking it along wth baclofen, zanaflex and klonopin which does help spasms. Last yr IVSM for vision loss and r leg paralysis. Decadron injections in both feet for nerve pain, finally alcohol injection in r foot to kill nerve-decadron didn't stop pain.
My question- neuro's blood tests (every 6 mos) twice showed elevated WBC so he sent me to specialist, body ct scan showd enlarged lymph nodes in chest.
Neuro said maybe I have sarcoidosis not MS. I know sarcoidosis mimics MS in many ways, biopsy showed Sarcoidosis in lymph nodes, no where else. I don't know if it will even be treated with steroids cause it doesn't show in lungs or any other organs.
I don't want both, also don't want to go back to the way I was before meds- spasms so bad I have scoliosis, DDD and disc bulges, my r leg would be a wooden,painful, stiff leg again, Copaxone I wouldn't miss, but I've had no new lesions since starting it. - only one flare up treated with IVSM in 3 years.
I also don't want brain biopsy to see if lesions are neurosarcoidosis or MS.
LP's came back clear.
I'm confused and a bit scared right now.
Any advice, experience would be greatly appreciated!
Thanks,
Debbie
Sponsor
hkholwerda
08-13-2006, 10:06 PM
I can speak to the brain biopsy. I had my surgery in June of 2005. I was scared going in, but without it who knows where I would be now! I was in the hospital for 8 days. On the 8th day I was diagnosed with MS and given the info about all of the CARB's. 1 week later I started Betaseron, and feel great compared to last year, It is always the last thing you want to do, however, all of my other tests couldn't determine what was happening.
Beest of Luck and Keep us posted!
Holly
Beest of Luck and Keep us posted!
Holly
lostifound
08-14-2006, 02:26 AM
OH MY GOD! I just spent about 40 minutes replying to Debbie and right before I hit the button to post the reply some other webpage came up! I just lost everything! I want to SCREEEEEAM!!! JC!!!!
Argh, I dont have the energy to write all that again. I will post again tomorrow. Debbie, my sister was dx with neuro-sarcoidosis about 4 years ago and I was dx with MS 4 days ago. I'll post tomorrow about all the similarities and differences in symptoms.
GRRRRRRRRRRRR... Elisha
Argh, I dont have the energy to write all that again. I will post again tomorrow. Debbie, my sister was dx with neuro-sarcoidosis about 4 years ago and I was dx with MS 4 days ago. I'll post tomorrow about all the similarities and differences in symptoms.
GRRRRRRRRRRRR... Elisha