AnonymousJuly 2, 2007 at 8:15 pm
I called again to my Neurologist’s office for a followup after seeing him from
April 3 for my CIDP. Since then, I have been in the hospital three times for
myopathy. He scripted me with 80mg of prednisone every day as well as
cellcept 2000mg daily.
Needless to say, it didn’t work…also the first hospital visit I had 5 days of
IVIG 50 grams each bag….second time three bags…third time 3 bags plus
250mg of methylprednisolone….before April, I was on 100grams of IVIG
over 24 hrs. at home with no problems at all.
When I called, it was for possibly working me in between other patients.
What gives? It was b/c of the treatment that I ended up three times in
the hospital. When I called before the last ER visit and admission he was to
tell his girl to arrange it…three days later, she said she didn’t know how to
do it.:( Then, I ended up in the hospital.
So, I called another dr. to make an appt….if the last one can’t work me in
upon his request after two weeks discharged from the hospital….who needs
him…he is the best immunosuppressant dr. in Miami…but then, my body
doesn’t want them…so I stopped them myself. Now I feel guilty, but
then again, it’s my body…:cool:
AnonymousJuly 2, 2007 at 11:52 pm
Did you stop the immunosupressants yourself? I can understand your frustration but I hope you do get in to talk to someone. I don’t know if feeling guilt is from stopping the drugs yourself or swithching Dr.s. but if its about swithching, you should never let guilt guide your decisions. You are right, it is your body and your its best advocate. Who follows you for your CIDP? The doctor who admitted you or the one that can’t get you in? Go to whoever listens to you. Good luck.
AnonymousJuly 3, 2007 at 12:03 pm
Yes, I stopped the steroids myself, seven days off of them…however, I read
all about the ramifications, so today I took 40mg because I felt some weird
tightness around the kidnyes. BUT, my hands opened up, I can transfer
quite well…just can’t walk. I believe getting off them, my body wants to
kick back in to normalcy.
The guilt comes from not continuing with my neurologist that started all of
this pill popping. I know he’s good, but his method is not working. He also
takes about 45 minutes to get to his office. The new one is a lot closer.
I hope it works out okay…I just have to believe it will. I joined the GBS/CIDP
Foundation a few years ago and have been getting calls from others across
the states…each case is so different, but the bottom line is trusting your
dr.. I think I lost that trust with the last one.
I’m just so tired of this…the not being able to function 100%. I have no
pain whatsoever…just weakness. Will this ever stop??????????????????
CIDP since 1997
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