Sorry to see you go–You have wonderful information to share with everyone–I thank you for the great sites you have steered me toward and wish you the best. Lori
[FONT=”Microsoft Sans Serif”]well, to give you an idea– dr. jonathon katz said many things to me in the jerkoff category. for example, as i was becoming sicker and sicker– unable to walk and little inconveniences like that, i said to him, “i’m scared.” his reply, “why are you scared? you have a little rash on your nerves and it should be gone by your next appointment.” he always said that i would be better by our next appointment, that it would spontaneously just go away. silly me, i bought into it– believing what sounded most appealing, i suppose. he also said to stay away from the internet because it was like a “sucking vacuum” with the few sick folks that didn’t remit on their own. further, he added that there is no proof that getting treated, with anything, makes any difference in terms of the disease “running its course.” when i asked him about all the folks on the forum whose disease is still running its course after several years, he reminded me to stay off the internet; and that many of those folks (you) are probably misdiagnosed anyway…
these were the ongoing messages that i got from katz for my 1st and crucial 6-7 months. when i walked in to see him at around the 6 month point, a crutch under one arm and sophie holding me up by the other, he shook his head and said, “okay, it would seem we were to casual about treating this thing.” finally, i thought. we ordered up ivig (5 days) — it did nothing at all. then, much to my dismay, we began the dreaded prednisone… if there is anything i feel i am still recovering from its that crap. michelin bodies don’t fit into uniforms…:cool:
i wouldn’t even know where to begin to criticize him– not treating me sooner? playing the disease down? not making himself aware of the truth about the SCT and hence being against it? his general callousness? and throughout my time with him, i seriously felt that his belief was strongly placebo based. for example, when i began prednisone and within 12 hours noticed a difference in my strength, he thought i “liked it too much.” also, he reminded me over and over how some folks get addicted to prednisone– it didn’t matter that i told him how much i hated, in fact despised the drug. my general impression, he should have placed his intelligence into research, rather than being a clinician…
pardon my having digressed here– homeagain, you got me going 😉
I like your last statement and I will show my husband . We all need to do that including me the caregiver. It can be so hard to see someone in pain, falling, ect. I know I need to be more positive. Maybe women are just more emotional but I know he has not been the same person . Seems better today. Improvements do help don’t they
I am not talking about a tens unit. I did not do a search on tens unit, because that was not what I was talking about. This thing is planted, surgically under your skin in the abdoman and the two leads ends are implanted under the skin and right on the nerves on the spinal cord. I posted on the GBS adult and here on the CIDP at the same time. I did describe what I was talking about more on the GBS adult, and if you would look there you will get a better understanding what I am talking about.