Hi, Janice, My doctors were all really good to me and I agree with you in that all they could do was to treat the symptoms. It's really hard to describe what it is that we TMer's are feeling when we talk about hot/cold, acid-like pain, painful spasms, the 'band', and everything else that goes along with it.
You had asked in another e-mail about the doctors, in my case John's Hopkins helping more than our own providers. I read about everything Dr. Kerr and others at JH have done and how they have helped so many but I just happened to get someone who didn't which was just the unlucky 'luck of the draw'. There are too many good things happening at JH that I just fell thru the crack. I'm fine as sunshine, tho, so who am I to complain??? ::)) Jeanne -------Original Message------- From: Janice Date: 4/23/2009 10:40:54 PM To: jrushton; Grace M.; tmic Subject: Re: [TMIC] Mayo Clinic/Johns Hopkins Jeanne, I wish I had known about this group from the beginning also. That isolated nobody else has this, feeling is the pits! I think it just gets down to the doctors just don't know much about this disease" and since it is so rare and they rarely run into it, I think they just don't want to mess with it. My doctors were very kind to me, so this is not coming from bitterness. Just being realistic. Anyway, that is my opinion. Janice ----- Original Message ----- From: jrushton To: Grace M. ; tmic Sent: Thursday, April 23, 2009 7:05 PM Subject: [TMIC] Mayo Clinic/Johns Hopkins Gosh, how I wished I had been part of tmic long enough to have had all of this advice before Jack and I took that long, expensive trip to Johns Hopkins to be seen by a specialist there. I wanted to see Dr. Kerr but they put me with another neurologist that was okay and did a pretty thorough exam but it even could have been better. He had me walk about three feet in the tiny exam room right beside the bed which is not anywhere long enough for those of us who 'walk' in order to really see how we do it! Plus he took down the info on the meds I was taking, hardly said a word, yet in his chart notes (that I received a copy of) he said he 'discussed with me at great length about my taking too much Ibuprofen and Tylenol, etc.' which was absolutely NOT TRUE and had been totally approved by my regular provider!! We sat there in silence so much of our visit and I was wanting him to ask me questions, talk to me, do something. Guess what his diagnosis was??? You got it! Transverse Myelitis! I was just devastated. I went to another neuro prior to that and he did the same sort of tests and gave me the same diagnosis. This was all after I had been originally diagnosed in ICU at Harborview Hospital where I was flown upon the original onset. I sure wished I had had you all the first couple years. It was scary, lonely, and I sure needed you!!! Now, I would do things much differently because of all I know, all I have learned from you all, and I was sassy before....now, I'm REALLY sassy!!! Jeanne in Dayton -------Original Message------- From: Grace M. Date: 4/23/2009 2:49:27 PM To: Sandy Heidel Cc: [email protected] Subject: Re: [TMIC] Mayo Clinic Hi Sandy, If you've had the privilege of being seen by Dr. Brian Weinshenker, you've been seen by the best. He's amazing. Not only is he a top notch researcher but he's a compassionate clinician as well. Hugs, Gracie
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