Desperate for answers? - Multiple Sclerosis Message Board

dutchess99 · 08-10-2006, 06:18 PM

How many of you have been diagnosed with MS, but previously presented most symptoms and yet MRI was not specific or not showing any changes.
-I have had severe muscle weakness ( i am on 40 mg of prednisone and that is the only thing that is keeping me moving)
-I have uncontrollable muscle shakes
- I have times when I can't hardly move my arms or legs and they feel like lead
- I have unusual tightness in my neck, shoulders, and back
- I have facial tingling, arms tingling, and my legs tingling and start to fall asleep
-I have been to a rheumatologist and have had the full rheumy work up (ANA positive 1:1280)
-I am currently seeing a neurologist who is baffled with my case and is threatening to send me to a research hospital if he can't figure it out after he does the EMG and nerve conduction tests
Does anyone have any clues? Can you help me. I have had five MRI's in the last few months and have given so much blood for tests that I have scar tissue in my veins.
PLEASE someone help!!!!!!!!

duttin · 08-10-2006, 08:09 PM

Dutchess,

My MRI's for 2 years were clear.I had symptoms similar to yours.Has your neuro done a lumbar puncture or evoked potentals?There are so many disorders that mimic MS.
The EMG/NCS is a good test to help with the nerves and muscles.I wish there was easier test and answers to these neurological diseases.

Toni

hkholwerda · 08-11-2006, 12:36 PM

Dutchess,
I completely understand what you are going through. Last summer, beginning on May 27th, I had 9 MRI's, every blood teest imaginable, spinal tap, and was looked at by a ton of doctors. I had no movement is my right side (arm and leg) and had major problems with my memory and speech. Unfortunately, but good in a way, my Neuro spent me to a different Neuro (MS Specialist) for help. My attack was so severe, and the prednisone was no longer helping, that they did a brain biopsy. 8 days after my surgery they diagnosed me with MS. I started a CARB right away.

It has been a little over a year and I am doing great! I recommend finding a MS specialist (don't recommend the brain biopsy unless absolutley necessary

). The National MS Society website is a great place to find info, and doctor locations.

Keep up posted and best of luck

Holly

dutchess99 · 08-11-2006, 07:25 PM

Thank you all for your replies. What is CARB? The neuro here said that if he couldn't figure out the answers he would be sending me to UAB a world renowned research hospital. I guess maybe that means a MS specialist?

KissAmeGal · 08-12-2006, 07:19 AM

It sounds as though i am going through the same things you are. It started with my Ortho, who sent me to a Neuro, who did the MRI's and nothing showed up on them either. then went to a rheumatologist, who did ext. blood work and ruled out just about everything else. So i took it upon myself to go to a Neuro Surgeon, as i have Cervical Spinal Stenosis, looking to see if maybe i would need surgery, but he said no. I have seen him B4 in the past, and he has referred me to Neuro that SPECIALIZES in MS. I too have all the symptoms, but nothing on the MRI. I go to see her the end of Sept. My Rheumatologist did put me on Skelaxin, Tramadol and Advil.......that has helped me tremendously with the chronic pain, but it doesn't help my other symptoms. Hopefully this specialist will give me answers. she also works with the MS Foundation.
Will keep in touch