24th November 2007
Hi, I was dx with MS Dec 2006. However for almost 15 years I had a dx of Fibro in 1992, TMJ, and in 1994 dx with ME/CFS. I too have GERD. I had so many symptoms marked off on the list, there was not many I didn't have. I too had to see a ENT for ear / balance problems. However, he couldn't find anything. I had so many tests and been hospitalized at six times due to dehydration caused by Gastroparesis (which I now know MS causes). My fatigue is exhaustion and balance problems are bad. Allegries to so many things and chemical sensitive. I failed the Romberg sign. That is standing with eyes close. I fall within seconds. This part of ME/CFS but also MS.
My neuro has seen something twice in my eyes over the years but dismissed it. Did you have an evoked potentials done yet? Mine were abnormal for eyes and legs. I know you had an LP. Mine was negative but I had enough from MRI, EVP and clinical for a definite dx.
I started experiencing double vision 8 years ago and ignorned it because of doctors ignoring me. 9 years ago I was losing bowel control. I told my GI but he didn't think it was anything to worry about. I continue to have problems with it. It is getting worse. This is a symptoms found in later stages of MS. I assume it was part of ME/CFS. I have been told that I can have both MS and ME at the same time with Fibro. I didn't recognize weakness in my legs. I just thought it was fatigue. They were going numb quickly at church when kneeing and then hard to get up. I noticed that I couldn't get up from a laying down position. I had to roll to the side to get up now. Now all I can do is raise my head.
MS is hard to dx. I would see a MS specialist to rule in or out that is what you have. L'Hermitte's is related to MS. I don't have that but I do get electric shocks in legs, face, arms at times. My ears constantly ring but what is worse is that I can't stand for pressure on my ear will cause pain inside ear like ice pick jabbing. I have the cold spots, numbness, pin and needles and twitching muscles, burning sensations...
Everyone with MS is different. I haven't been on Avonex a whole year yet. It doesn't help the symptoms just slows down the progression. Most with RRMS are still working. I was disabled in 1993 with ME/CFS it was that bad.
I wish you all the best. Please see MS specialist to help you one way or another. Don't ever give up if you don't feel the dx is not right.
Bunni 54 years :)
dx RRMS 12/06
Avonex, Klonopin, Flexeril, Skelatin
My neuro has seen something twice in my eyes over the years but dismissed it. Did you have an evoked potentials done yet? Mine were abnormal for eyes and legs. I know you had an LP. Mine was negative but I had enough from MRI, EVP and clinical for a definite dx.
I started experiencing double vision 8 years ago and ignorned it because of doctors ignoring me. 9 years ago I was losing bowel control. I told my GI but he didn't think it was anything to worry about. I continue to have problems with it. It is getting worse. This is a symptoms found in later stages of MS. I assume it was part of ME/CFS. I have been told that I can have both MS and ME at the same time with Fibro. I didn't recognize weakness in my legs. I just thought it was fatigue. They were going numb quickly at church when kneeing and then hard to get up. I noticed that I couldn't get up from a laying down position. I had to roll to the side to get up now. Now all I can do is raise my head.
MS is hard to dx. I would see a MS specialist to rule in or out that is what you have. L'Hermitte's is related to MS. I don't have that but I do get electric shocks in legs, face, arms at times. My ears constantly ring but what is worse is that I can't stand for pressure on my ear will cause pain inside ear like ice pick jabbing. I have the cold spots, numbness, pin and needles and twitching muscles, burning sensations...
Everyone with MS is different. I haven't been on Avonex a whole year yet. It doesn't help the symptoms just slows down the progression. Most with RRMS are still working. I was disabled in 1993 with ME/CFS it was that bad.
I wish you all the best. Please see MS specialist to help you one way or another. Don't ever give up if you don't feel the dx is not right.
Bunni 54 years :)
dx RRMS 12/06
Avonex, Klonopin, Flexeril, Skelatin