My neurologist seems to think I have MS. He originally thought I had Gillian Berre, but he eliminated that, so he says. I've been doing a lot of research on the internet and I guess I have some symptoms, but they don't seem so extreme.
:wave: For example, I have have numbness all over my body. The feeling my skin has is very dull! My legs are weak and I can't do the things I could do only a month ago. I'm only 22 and my muscles seem to hurt when I don't even do anything strenuos. I had urine, blood tests, 2 MRIs, a spinal tap, and this saturday I will be having and e k something or other to test my nerve reponses. Does this sound like MS to anyone because I left the hospital undiagnosed? Also, I read that MS can form from a virus. When I was 1 I had spinal menigitis and at 2 I left the hospital undiagnosed with fluid in my brain and I guess I had to learn to walk again. There are so many MS symptons that I don't have. Whats wrong with me?????:confused:
Lindsey, lots of us know how tough it is to be undiagnosed for a long time - try to avoid getting stressed out about it (easier said than done, but practice relaxing).
They seem to be hunting for neurological problems. Do you know the results of your MRIs and LP? The next test could be a clue. If it is an EK-something that sounds like they might be looking for something other than MS. If it is evoked potentials they may be looking for MS. Either way, try to be patient, they seem to be agressively looking for answers.
The virus thing, there was discussion on this board a while back about a theory that the Guillian Barre' (sp?) virus may be linked to MS - it is the virus that apparently causes mononucleosis. That's only a theory, though. I believe the syndrome (that they have ruled out for you) is a more agressive attack by the same virus.
Hope this helps!
Everything came back normal except I had a degenerating disc (which I guess is normal for athletes) and they said they saw a fuzzy spot around my kneck in the MRI, but claimed it was just swelling. My spinal tap, blood, and urine all came back normal. The test I'm taking Saturday will tell if the messages from my brain to my nerves aren't connnecting or if it is a direct muscle related problem. (I don't know why this test didn't come before a Spinal Tap). Hopefully, they find something so I can start taking some kind of medicine. I've never wanted something to be wrong with me, but if I go undiagnosed I may continue to get worse. I just want the feeling to come back to my body. Thank you for you response!!!!!!
There are so many medical problems that mimick MS symptoms.
A degenerating disc can definitely cause the symptoms you were talking about with the numbness. Please don't think that you'll be able to 'take something' and you'll be better. You may just need physical therapy or even surgery. My mother has had surgery due to degenerating discs and she's doing just fine. Actually, even more ornery than before!
My neurologist said it has nothing to do with the disc degenterating that that will not bother me for years. I'm concerned about the medicine because other people I have talked to that have been diagnosed with MS at an older age said if they had known 20 years prior they could have prolonged the damaging effects of MS instead of being in a wheelchair at 40 years old. I have no other symptoms of MS because the numbness, but my DR said they come in attacks and get better. Do you ever get feeling back or does everyone just deal with it?
I have never had the feeling return. My "tingling' is in my hands and fingers on my left side...and the doctor told me for the first year that it might go away at any time...no such luck. Ive been on Rebif now for almost a year, and it hasnt helped any initial MS related problems..I am still completely numb and usually in pain in my left hand and arm...in fact, I had 2 more attacks the first 5 months I was on it...the good news? I have been on it more than 11 months now, and in the past 5 months, no more attacks...they did warn me it can take up to 6 months to really start working...also, after the first 5 months, no more side effects from the injectable drug either. THats a huge relief, as I was about to go off it, when things started to get better.
Good luck to you.
Last edited by MSNik; 04-12-2007 at 08:14 PM.
Reason: missed a word!
Lindsey, I'm happy to report that the severe numbness I had (that ended up in a MS dx 6 months later) has nearly gone away. Some days I feel almost "normal", other days (and if I am tired or stressed out) it comes back in a big way.
Also, regarding a relatively late in life dx, I was 48 when I got dx'd (I'm 50 now). It is clear that I've had MS for over 15 years. But MS is as unique as the individual that has it. In my case it has always been relatively mild (my symptoms are almost entirely sensory rather than debilitating). Nevertheless I started meds right away and am glad I did.
One more thing about the test tomorrow. My neuro explained that one type of test checks the function of your central nervous system, another type tests your peripheral nerves. You may want to ask which they are testing (or just report back here what the test involved, we will be able to tell which it was!)
Hope all goes well!
Its good to hear that there is hope. The test I had involved hooking up wires to my head and kneck. The first thing they had me do was look at a dot in the middle of a screen with black and white checkers moving in different directions. Then they put headphones on me and I listened to beeping in one ear and fuss in the other. Then they kind of zapped my right hand. I'm suppose to get the results tomorrow. The doctor hasn't been very informative. I guess he doesn't want to scare me unless he's positive, but it would be nice to know what direction I'm headed in. Did you have any crazy undiagnosed viruses at a young age or diagnosed? I had spinal meningitis (wrong spelling) at one and an undiagnosed virus at 2 (fluid in my brain and couldn't walk). I wonder if there is a connection.