Symptoms, Symptoms, Symptoms, but I can't get a diagnosis!

Hi Everyone!

I started having unusual symptoms years ago, but they would come and go. Examples: I would have periods of time that I couldn’t write my name legibly…I would joke about it and just thought everyone experienced it. My lips and nose went numb and I experienced difficulty climbing stairs…again I wrote it off. BUT then 3 1/2 years ago I experienced “charley horses” in my calves that didn’t go away for months…my legs became so thin and my gait was extremely altered. A woman who lived by me and has had MS for over 50 years told me that I needed to go to a Dr., but she didn’t say anything about suspecting MS. So my Dr. visits started.

I went to a local neurologist who did multiple tests…needles in the legs to register muscle response (normal), MRI of the brain without dye (old lesions), spinal tap (g bands present), still neurologist said he didn’t think I had anything really wrong. He finally sent me to a specialist out of state…ALS Dr…good grief !..I knew I didn’t have ALS. The ALS specialist said that she thought I have MS…so I went back home and saw my neurologist again. He sent me back to the same out of state clinic…the MS specialist sent me home and said I just have too much stress in my life…she only talked to me for about 5 minutes and that was the best she could do for me.

Finally my neurologist sent me to a urologist and an eye specialist and said “if they think you have MS it will help me to make a diagnosis”. Well they both say I have MS. I’ve had more tests…another spinal tap and multiple MRI’s. The ONLY thing that I don’t have is NEW lesions on my brain. How can I get help? I have read that 5% of MS patients do no have brain lesions.

Does anyone have advice for me…this is getting so frustrating. My symptoms come and go OR hang around in a milder form than a typical episode. Example: 3 weeks ago I started having very tight muscles again and for over a week I could barely walk. The walking has improved again, but now I can barely go up stairs and my muscles are still tight.



From some of what you say, it appears you’re not in the UK (and this is a UK site). So anything we might tell you is probably completely wrong.

If you’re in the US, try someone there’s should be able to help.