For instance, when I could not heel-to-toe walk to save my life, my neuro wrote that I was able to heel-to-toe walk very well. When I was very unsteady on my feet a neuro wrote that I had excellent balance. Never have I ever found mention of my very positive Romberg sign in any neuro's documentation. When I went to the ER last summer, the MD told me he felt it looked like MS, but he would not write that down officially - instead he wrote that I had "silent migraine." Moral of the story: Always get copies of all your medical reports. You may be amazed!
I think it is pathetic that when I tried to send all of this info to you in a letter, it was re-routed to an MD. Is "Big brother" here on this website? WAF
You were surprised your stated hospital admission diagnosis was "optic neuritis" with no mention of your significant presenting symptoms of lower extremity paresthesias with inability to move your left leg. That was no error. You see, hospitals have software that tells them the most innocuous way to state presenting diagnoses, etc. so as to avoid potential litigation. It is amazing how often and how much our documented medical experience is changed by hospitals and doctors for their own reasons which is why I now always obtain the written record of any significant medical interaction. I have been totally shocked at the misrepresentations I have found! Sometimes the MDs have written the
opposite of what actually took place. More on this later. WAF
You say your neuro wants to keep your MS diagnosis: Stay with that neurologist, treasure that neurologist!! Don't go to anyone else for re-evaluation of your diagnosis! Especially, do NOT go to "MS experts" or "MS centers of excellence" because, in my experience, contrary to our expectation, they exist not so much to diagnose, as to block diagnosis or to remove diagnosis. And once an "MS expert" has definitively said you do not have MS, it is very hard to get anyone else (except the bravest) to show any
interest in contradicting that pronouncement. Do NOT go to MAYO or any big-name facility. Remember, universities and such facilities receive substantial funding from our govt.
You asked, "How could they have gotten it so wrong in the first place as they, at the time, had ruled out the mimics." Most likely the poor radiologist reading your films, who was just doing an honest job, reporting it like he read it, has probably since then caught Hell for suggesting the possibility of MS from your MRI markings. In my experience, there is (unofficially) a real suppression of neuro diagnosing currently in this country, especially for older people. Once we pass the upper age limits for govt. disability, then it becomes much easier to be diagnosed. WAF
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