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Old 01-11-2018, 08:57 PM  
Barbi-girl
Junior Member
 
Join Date: Dec 2017
Posts: 23
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Dr. Kaminski exceeded my expectations! I am so fortunate to have seen him today and must surely have a guardian angel who made this happen. He is brilliant, humble, professional and really listened to my ďstoryĒ before reviewing medical records and test results. He said with 100% confidence that I have Myasthenia Gravis, no doubts whatsoever. He acknowledged that most Neurologists are very hesitant to declare a diagnosis simply because they donít see enough of,these rare disease patients. They tend to only be confident if the Patients are seropositive, which I am not. He told me he sees MG patients exclusively and 10%nof his patient population are seronegative.

He ordered a tapering if the prednisone to begin immediately. In addition, wants to do 6 months of IVIG infusions while giving the Cellcept time to kick in. He identified other contributing factors and consequences of the prednisone which need to be evaluated - will enlist my primary care to assist here. He talked with me at length about what to expect in terms of the long haul of this disease, how the first year is the hardest.

What he gave me was hope! I cannot say this enough to all MG (or,possible MG),patients...if you have a bad feeling about your current doctors or treatment, seek out the best. Donít let distance or money be an obstacle. This is your life and you only have one chance with it. I think Dr. Kaminski may have given me back mine.

Oh...he will be sending communications to my local Neurologists because he recognizes Iíll need someone local to execute his treatment recommendations. Ill see him again in 3 months and have a way to contact him, if needed.

Today, was a GOOD day.
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"Thanks for this!" says:
AnnieB3 (01-12-2018), mrsD (01-12-2018)