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Multiple Sclerosis Message Board


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Bearygood:

My symptoms mostly started in mid-April of this year with some numbness in the soles of my feet. I thought this was from running in bad fitting shoes. However, over the next few weeks, I developed strange tingling sensations at various spots of my body (felt like somebody was spraying me with freezing water), reverberation feelings in my legs, and then, one night, my arm started burning, like a bad sunburn. I finally decided to see a doctor about these symptoms. I knew they were neurological in nature, but I went to my PCP anyway. He ordered all the standard blood tests, and then a brain and c-spine MRI. The brain MRI showed some spots, and he suggested seeing a neurologist (though I knew this was obvious). The original symptoms have since gone away.

When I went to the neurologist, he reviewed the MRI films and did his office exam, and his initial diagnosis was that it probably wasn't MS, but some sort of post-viral myelitis. (Now, I think all neurologists follow this course, start with a conservative diagnosis). The original plan was to have a follow up MRI in a few months, and then possibly an LP. However, in mid-July, I started having new symptoms. The first was that after a shower (I tended to take pretty hot showers) I noticed my lower back buzzing, like a pager. This would intensify if I bent my back or neck forward (though it wasn't painful). Then, a few days later, I walked about a mile to the store (it was pretty hot outside), and noticed my legs were buzzing. Again, this would intensify if I bent my neck forward. Based on these new symptoms, the neurologist said to have the new MRI a few weeks earlier, and this time include the T-spine (after I suggested it). This MRI didn't show any new or enhancing lesions, but the T-spine did show a lesion that was probably missed on the earlier MRI. Also, the new MRI clearer because it was done on a closed machine (The original was an open machine. I have since learned that the stronger, closed machines are much better for MS workups). When I went for the follow-up with the neurologist, he now leaned toward a diagnosis of MS, and said "which drug would you like to choose." I'm still not quite sure why he changed his diagnosis, and will press him at my next appointment. But, just last week, I did go to an MS center near me, and the doctor there concurred with the MS diagnosis. Then he gave me some nice packets to help decide on a drug. By the way, it was this MS doc and a nurse that worked there, that both said all 4 drugs were probably equally effective. Now, my symptoms so far have been mostly sensory and fairly minor, so I guess I'm pretty lucky in that regard. But I'm anxious to start some treatment to try an limit the damage.

I should also point out that on a follow-up with the PCP, he recommended the Igenex lyme disease test. I later found out that this PCP is a so-called LLMD (I didn't specifically seek one out). At the time, I had heard of Igenex, but did not know about any of the controversy surrounding lyme disease and its diagnosis. So, I went ahead and had the test done (out of my own pocket), and, lo and behold, it comes back positive. The PCP was convinced I have lyme disease, and prescribed some potent oral antibiotics. I never had any of the other symptoms (headache, fever, joint pain, etc), and wasn't convinced it was lyme, but thought taking oral abx would be pretty harmless, just in case. I was wrong - I got pretty sick from the abx. Since then, I've moved away from this lyme diagnosis.

Sorry for the long-winded post. If you have any other questions, let me know.





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