New here and not sure what is going on with me - Multiple Sclerosis Message Board

Sandpuff · 10-04-2007, 05:04 PM

Hi - I am new to this board. I'm 35 and have been having sometimes bizarre medical issues since 1998. It started completely out of the blue with fatigue and what ended up being diagnosed at mayo clinic as spinal myoclonus. My whole upper body would repeatedly jerk forward whenever I was sitting or laying down. Local doctors were mystified and sent me straight to a neurologist who mentioned ms.

I went through every test there is at mayo clinic that year. Everything came back normal, including lumbar puncture. The neurologist felt it had an autoimmune etiology and ordered a 5-day IV of Solu Medrol which seemed to help for a short while.

I was very healthy prior to this but I do suffer from depression off & on. In my quest to get answers as to why this was happening to me, my gp began treating me for depression or anxiety any time I went to her complaining of fatigue, even though I'd tell her I wasn't depressed. So finally I gave up after a couple of years and swore I'd never go to the doctor again.

Since then I have been incapable of working full time. If I overdo it one day I am completely wiped out for a few days. My right leg feels heavy and when I walk up the stairs a wave of tiredness will come over me for a minute. My eyes hurt and if I get overtired the myoclonus will show up, although not nearly as bad as it was in the beginning.

Over the last 9 years I've had long spells of feeling good followed by long spells of feeling bad. Six weeks ago I started feeling bad again with fatigue, chest pain, night sweats, and the feeling of heaviness in my leg. My eyes are hurting as well. They just feel like they're bruised sort of.

The MRI's and LP that were done in 1998 showed nothing. Would it still be possible for this to be from MS? I don't want to have a disease, but not knowing what's going on is driving me nuts. I also don't want to make a big deal out of nothing, but sometimes I just get fed up with feeling bad. I've had other things like rashes and swollen glands so I was posting on the lymphoma board but it looks like that's not my problem after I saw an ENT today. I'm kind of grasping at straws at this point.

M

Bearygood · 10-04-2007, 05:47 PM

Hi, Sandpuff. Your symptoms seem to be very general -- there's nothing that wreaks specifically of MS but that said, this is a very unique kind of "anything goes" disease so it's hard to know! The heaviness you describe with your leg is something you can experience with MS (as is fatigue) but the chest heaviness, night sweats, eye pain aren't big clues and the fatigue and leg heaviness could also be other things.

However, it is is intriguing that MS and a possible auto-immune origin was mentioned previously. 10 years in-between MRIs is a VERY long time so as much as you hate the thought of beginning the cycle again, it sounds like it would be wise to follow up via a neurologist. If you feel strongly that MS is suspected, you could go to a specialist but personally, I'd start by seeing a general neurologist. Whatever you decide to do, it would be good to get hold of the reports and films and bring them to your appointment -- they can be good baselines. In MS, the disease causes lesions (not the other way around) so it certainly is possible for nothing to show right away -- this is one reason some people have a hard time getting a dx.

Good luck and keep us posted!

Sandpuff · 10-05-2007, 07:38 AM

Thanks for your input. If I continue to feel bad I will probably look into seeing a neurologist again. I just picked up all my medical records from the clinic I've always gone to and one doctor wrote that he suspected a demyelinating disease even though the mri's were normal.

When I read that it started me thinking again (not a good thing) and I started wondering if ms was still a possibility. I think I'm going to try to just put it out of my mind so I can just live life and not worry about the what ifs. I guess if it is something serious I'll get more definitive symptoms eventually. Take care!