Quote:
Originally Posted by Mariel
Erika is on to something when she says that a neuro might want to pick and choose his patients so that they fit his research parameters. This is true of some of the top specialists in another disease I have, porphyria. They need a homogenous body of patients for their research, but not everyone fits that homogenous body.
I am disgusted with the neuros I had for MS. perhaps 50% said I had MS. Other said I did not have MS. What did that tell you, anything? To me it says that some patients are not easily diagnosed. And some won't bother with those who are not.
I will say I consider Dr. Swank an exception (he's gone on to his reward, however, so can't go to him, Shadiyah). The neuros who thought I DID have MS were the ones who were excited about their work and excited in the diagnostic chase, and interested in people who presented a little differently, or who had a complex situation involving more than one disease. God bless them!
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This doctor I seen was top notch and I think it is true that he didn't want me. he looked at my test and blood work and didn't let me talk to explain what I was going through these last 10 months. he asked me questions to answer but he didn't let me go through my list of symptoms I had written down and I had videos of my tremors and twitches because I am in a little remission from them and other things are going on. he told me to go back to my old neuro. I was expecting him to say tell me what's been going on and to set me up for his own test. my old neuro after all the test we went through sat me down once she got the LP and said I never though we would be having this conversation but it's looks like it is MS. she set me up for the steriod infusion and I went into the hospital and got that done but my BP went up so high it scared the scrap out of her and she said I need to rethink this I think something else is going on because your BP shouldn't have gone up that high. but you all had already told me this could happen but she just would not believe it was the steroids.
that is when my primary said he wanted me to go to the top notch specialist. oh he told me to walk for him and when he told me to put one foot in front of each other I tell you I was falling all the way and he never moved to help me. my old neuro would hold my hand so I would not fall.