Good Morning! New to message boards all together so please forgive any errors, stupidiy, or anything of the sort.
36 year old female who has always been healthy and active - rarely any health problems with the exception of mono.
13 years ago went to the ER and was dx with Bells Palsy. No MRIs were performed. Dr. thought it was due to college finals stress. Over a 13 year period, I have had a number of wierd symptoms that I didn't go to the doctor for such as: electrical shock down the neck and most recently painful electrical shocks to the most sensitive part of my body; brief fluttering in my ear, legs feeling heavy, fatigue, waves of dizziness, thought I had a broken rib due to stabbing pain in the ribs, and a host of general other symptoms. HOWEVER, one month ago I woke up with extreme numbness in my hands, feet, and entire torso. It has never subsided. It is worse at night and feels like I have ace bandages wrapped around me.
My PCP was concerned and immediately did two things - ruled out Lyme and a host of other diseases and also ordered a brain MRI. The brain MRI said "Non specific patches compatible with MS." I also had a spinal MRI of the cervical and thoracic region. There was one crystal clear lesion in the C2 area of the spinal cord. I had two evoked potentials - sensory and visual - and both were slightly abnormal. My spinal tap was also slightly abnormal.
My neuro said it was possible to probable MS but because of only one clear cut spinal lesion, he had to rule out a few other things such as a spinal cord tumor. I guess the "non-specific" brain lesions don't count? He also wasn't completely ready to commit to a course of treatment until he saw another MRI and ruled out the tumor. He thought the location of the lesion was much more specific to MS rather than a tumor. I am scheduled to have a second spinal MRI in two weeks so we can get a comparison. This is the tough part - the waiting. Honestly, MS sounds much better than a spinal cord tumor. Anybody have any thoughts, shared experiences, similar situations that can ease my mind?
I have lived with MS for 26 years (30 years since first symptoms). It is only scary if you allow it to be. Life with MS can be filled with wonderful blessings regardless of the body's physical condition. My MS came on during college too. It may have been the trigger for me to finally notice the foot drop, etc. that I had experienced since I was 14 years old.
If you do indeed have MS, learn to listen to your body. For me there are certain triggers which can bring forth problems. Avoiding the triggers is not 100% perfect, but it has helped me maintain a med-free life with my own sense of independence. Get plenty of rest and do not overwork your body.
I think the most important thing to realize is that you are not alone in this. Many will share your symptoms and there is plenty of experience here on the forum. In the meanwhile, you are in my prayers.
Illness (Bell's Palsy) onset during finals suggest that it began in the spring? Bell's Palsy is a classic onset symptom of Lyme Disease, but also other infections. I would request a month of antibiotics to see what happens. If you feel worse after a few days and better after a few weeks, then it is probably infection, despite what the tests say.
Last edited by duncan1; 11-27-2008 at 12:07 PM.
Thank you so much for the responses. I appreciate them! To clarify a few things that I didn't expand on: the Bells Palsy was 13 years ago and only lasted about 3 days. I haven't had any more problems with Bells Palsy - just the other host of crazy symptoms. I have been tested for Lyme Disease three different times and the doctors have ruled out pretty much everything other than MS or a spinal cord tumor. My fear is not of the MS, but more of finding out this is a spinal cord tumor. My PCP and neuro agreed that the one lesion is in a funny spot for a tumor - a location much more consistent with MS. I guess it is just tough when everything points to MS but only one lesion shows. Honestly, I wish that second lesion would show up so we could rule out the spinal cord tumor and I could have clear answers. I guess life doesn't always work that way, huh?
The best test available for Lyme is the C6 ELISA, and it is only about 70% accurate, and as a a rule of thumb about 1/3 of Lyme Cases will always test negative. The IGenex Westen Blot is probably a bit better, but it's hard to know. There are lots of case reports of culture positive, yet sero-negative, Lyme Disease, and the only way (really!) to rule out infection is a trial course of a suitable antibiotic.