Reply To: Help-Considering Stem Cell Transplant

January 22, 2013 at 3:52 am

that is good to know Pat–thank you—so even if I dont get accepted, at least going out there for three days wouldnt be a waste if Dr Allen was able to recommend a treatment plan.

I’m really hoping to get accepted though.  My symptoms are not quite as “typical” as some with cidp, but my main symptoms are weakness, i have a slightly elevated LP, nerve biopsy shows inflammatory process, and an identified abnormal anti-body—all of these point toward immune disorder.  So my thoughts are whatever the
“disorder” a whole new immune system from a sct should fix it???

I figured it may take a little while with all the holidays, etc since i have sent in my info.

I did have a message from Paula on thurs that Dr Burt had reviewed my info and had a few questions—–must mean he’s considering me at least, if he has ?s 🙂   I didn’t get the message until after they closed thurs—time difference.  then of course the weekend, and Paula’s off on monday–so it’s been killing me waiting until tomorrow–tues when hopefully i can talk to Paula and see what the questions were.

I was surprised that you are feeling well enough to go back to work for a while during the process.  that is going to be my biggest hurdle, trying to maintain my small business while getting it done.  It is the main reason i have waited this long to apply, i kept hoping i could get treatment without having to be so far away.  In the end all i ended up doing was wasting 3 years on very conservative treatment that has done nothing for me.

I see in your post that you got ivig while at northwestern to keep you from getting worse—that is good that they care enough to keep you from getting worse.

I started getting worse in Oct—4 months after rituxin. Called and asked my dr if i should get a second rituxin treatment or at least some ivig, since we knew the ivig kept me stabile.  She told me that I should continue to let myself get weaker and decline so that when i go see the new Dr, he will see me in that condition!!!! is this not the most stupid thing anyone with cidp and knows anythng about it has ever heard???  keep in mind. i wont be seeing the new Dr until later this month, so this was 3 months ago. What is the point of getting worse when there is treatment to prevent it, or the point of declining, now theres that much more work my body will have to do to heal these damaged nerves when i do find a treatment that works.

did Paula/northwestern take care of applying to your ins co for  the sct or did you have to do that yourself?