Janice, I went to John Hopkins and I did meet with Dr. Kerr plus 5 or 6 others. I can't remember all thier names. I was given the same tests - blood, spinal tap & mri.
Dr. Kerr agreed with the dx BUT he also stated that he thought I had Sjogrens - which rheumotoloist (sp?) confirmed. Dr. Kerr also suspected NMO but so far no more problems BUT my eyes are getting worse. I was terribly nearsighted - almost legally blind, had lasic approx. 10 years ago with good results but now rely on my glasses more and more for distance. I can read at normal distance but beyond arms length, I want/need to wear my glasses to make everything clear. The best thing about going to Hopkins or Mayo is that you get on their list and you can participate in trials. PLUS, you are asked to donate the surplus blood and spinal fluid so that they can be entered in a data bank to help research. Also, I got more peace of mind knowing that I had seen the "best" in the field and the dx was the same. OH Yes, Dr. Kerr recommended that I take 8 mg of Tizanidin (Zanaflex) 3X a day - BUT that was just too much for me, I wound up sleeping all day & night except to get up to potty and sometimes eat. I did lose weight but don't recommend that route. I have cut back to 4mg morning & afternoon then 8mg at night. I do sleep for 8 - 10 hours at night and don't have nearly the spasms I did with the old doseage of just 4mg at night! Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. ----- Original Message ----- From: "Janice" <[email protected]> To: "transverse myelitis" <[email protected]> Sent: Thursday, April 23, 2009 11:50:17 PM GMT -05:00 US/Canada Eastern Subject: [TMIC] For those of you who went to Hopkins or Mayo, were they able to help you any more, physically, than your regular doctors from your home town? What would Hopkins or Mayo do that would make any difference in your recovery? Janice
