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How My Health Is Changing My Life - Part 3

Posted 02-07-2012 06:35 AM by dogmum

The idea of multiple sclerosis terrified me. And now, not knowing was also terrifying me even more. I decided to do some reading on my own, so that I could know something by my own research about MG, MS, and the symptoms I was experiencing.

As for MG, considering that ALL of the tests were negative AND I had a negative response to Mestinon, it started to look very unlikely that it's what I have. So why is my doctor still insisting on this dx? Why is she pushing me to do the surgery so quickly?

I had another followup appointment with my neurologist at the end of January. She wants to start tapering off the steroids and I think this is a good idea. My left hand is still having pins and needles and is not very sensitive or working very well. She tries to dismiss it as normal since I'm right handed. I told her that I asked for a second opinion from my doctors in the US and they recommended a spinal MRI. She reluctantly orders an MRI without contrast to be done in March. She tells me once again that all of my symptoms one by one "non centra neinte" (don't mean anything or are not important) in relation to myasthenia gravis. At this point, I feel near to tears and just want to bang my head on her desk in frustration. I say ok and leave, feeling angry and stressed that my body feels like it's falling apart and I have no one to turn to for help.

About my "impossible" symptoms that are totally "unrelated to anything neurological" though:

I've learned that the odd shock that sometimes runs through my leg when looking down is likely a neurological sign related to lesions on the spinal cord and is called Lhermittes sign. I learned that it's mostly associated with MS.

I also heard for the first time, here on HealthBoards, about the MS hug and a very little bit of research on that told me that it's the same kind of pain I've been having in my chest.

Add to that, I've also been learning about Optic Neuritis. Once learning about it, I went to see a good ophthalmologist who told me that what I had was indeed ON and that I should be working with my doctors to understand why it happened. He gave me a referral to a top neurologist outside my area who's also the head of the MS society in his region.

So, if these symptoms concern ALL the doctors outside of my little hospital here, why doesn't it concern my local doctors? Why is everyone else sending me to see MS specialists and asking me about test results of tests I've never heard of when my doctors here are reluctant to do a C-spine MRI when I'm having trouble walking or feeling my hand. What am I missing here?
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