Pain and Stem Cell Transplant
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October 24, 2011 at 11:46 pm
I would like to know if the people that have gotten transplants, if they had any pain before they went through it (neuropathic pain) and if it got rid of the pain.
Linda – You would be able to answer this. Yes, I still have my pain. I have tried everything and so far nothing has helped. I am so depressed from it and feel like I have no life anymore. I have not lost any strength, but the pain is getting unbearable. I don’t think I would be a candidate for stem cells, since I am not in a wheelchair, but I was curious if it got rid of the pain.
Clare in Michigan -
October 25, 2011 at 3:34 am
[FONT=”Microsoft Sans Serif”]Very sorry for your pain.
I had excruciating pain, non-stop for years. I have none now. It didn’t go away immediately, but after SCT arrested the CIDP and my body began to heal, my pain subsided.
Your worry about not being eligible due to not being in a wheelchair is unnecessary. On the contrary, they are accepting less and less people that are too debilitated. They believe that it is better to stop the CIDP before it has done too much damage…
Linda can say more about this too.
Alice[/FONT]
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October 25, 2011 at 8:06 am
Clare,
I had screaming pain in my feet for the past year or so, nothing seemed to reduce it except to not use them! I found myself less able to walk because of the pain but not because of muscle involvement. I was told by the neurologist at NW that he didn’t think the stem cell transplant would help my pain. He was wrong!
Post stem cell transplant, I can walk without that screaming pain. In fact, while recovering in Colorado, I walked 2 miles each day (and it was hilly)!! I can walk through a grocery store again without using their electric cart! I feel my body is no longer under attack and so that is the reason my pain is subsiding. Please keep in mind that there is also some healing pain … as the myelin sheaths repair, allowing the nerves to repair, there is some pain. And that process takes a year for noticable results in the nerve conduction studies.
But if nothing else happens – no more healing – it was worth it to me to be out of that type of pain! And I am very optimistic that I will continue to get better! My energy level is better and it doesn’t hurt to walk.
I’m happy with the results!
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October 25, 2011 at 1:40 pm
What is the first step in acquiring the transplant? Is it difficult to get the insurance to comply with it? Is this the only place doing it?
Clare in Michigan -
October 25, 2011 at 5:40 pm
Clare,
You can contact Dr. Burt’s nurse, Paula, and request an application package be sent to you. Her contact information is:
Paula Gozdziak RN BSN
Clinical Research Nurse
Northwestern University
Division of Immunotherapy Department of Medicine
750 North Lake Shore Drive, #649
Chicago, IL 60611
(312) 503-1435 phone
[email]pgozdzia@nmff.org[/email]Or go to the webpage:
[url]http://www.stemcell-immunotherapy.com/[/url]
As far as insurance goes – it is hit and miss. Some have been denied, some got approval after several appeals and some, like me, went through the first try.
Good luck,
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