To Do or Not To Do????

January 16, 2010 at 11:25 pm

Thank you both so much for all the information you have shared with me.
I thank God every day for this forum. I feel like it is my safe place to fall.
There is only so much you can say to your family day after day about how
you are feeling. Besides, they can look at me and know that I feel bad. I
haven’t been able to do anything lately. Just getting out of bed and getting
dressed seems like an accomplishment these days. It’s sad how I used to
take my ability to do all my activities for granted. I would work and
run around all day long doing things. That was in my past life.

I am beginning to think that I am not getting better because I am not
getting any treatment except for Prednisone and Cymbolta (which has
helped lessen pain!) I know that Cymbolta just masks the problem, but
so what if it helps?? My regular Dr. here doesn’t prescribe it because he
says, “It’s a band aid approach to the problem.” It plays with your Seratonin
so that you feel less pain. In reality, the pain is still there. Okay, I can
accept that. Why is it bad though if it means I can take 2 less Vicodin
a day?

Dick, I think I now understand why I have to have IVIG before Remicade
or anything else. Remicade wipes out your B cells. I need the IVIG to
protect/ build them up. Is that right?

Dawn Kevies Mom, I was on IVIG for well over a year and there was no
benefit for me. It didn’t even lower my sed rate or CRP. My Doctor was
very surprised. I finally called it quits and we tried Orencia. After six
months, Dr. and I saw no improvement. So “Goodbye” to that too.

I have to do something! I am getting worse! I just don’t know what to
do. There is the Rituxan option and Remicade. Would you try IVIG alone
again? I guess I am frightened to make a decision because I have seen
no improvement after doing all of these things. So, in my mind I think
well maybe it is better to do nothing than something that won’t help
anyway. Is that faulty logic?? How much worse do I allow myself to
get before trying something?

Where would you go from here? I saw Dr. Michael Graves at UCLA who
is on the Medical Advisory board of this organization. He felt that I
didn’t have CIDP. He things it’s a Neuopathy, but doesn’t know what.
He told me not to do Rituxan. He said, “Is that Doctor trying to kill
you!” My husband and I couldn’t believe it. He referred me to
a Rheumatologist at UCLA. I will see him, but I have been seeing one
here for several years who is committed to the CIDP diagnosis.

It kind of upset me that Dr. Graves gave up on me. I wanted him to
diagnose the Neuropathy, but maybe he can’t. His specialty is CIDP.
Who do you believe? How do you make the best decisions for yourself?
I see this in so much of what is written on this forum. There is just a
mass of confusion. Is it that it still new? We are still learning about
all these different neuropathies?

As always, your opinions and information help me more than I could
ever say! How about a huge group hug??? :rolleyes: