Six Months Post Stem Cell Transplant (sct)
AnonymousFebruary 25, 2012 at 5:30 pm
This past week I hit my 6 month post sct milestone for CIDP and thought I would post an update and results of my follow up with Northwestern Medical Facility in Chicago.
All my blood work is back in the normal range and I am down to one anti-viral post sct Rx (initially, there are 3 Rxs). I am no longer on any medications for pain/walking mgt (was on daily Namenda, Amyra, Tizanadine, Gabapentin, Nortiptyline, Klonopin and Norco) and have not had a treatment of any kind (IVIG, Immuran) since before the sct.
My nerve conduction study did not show significant improvement, but that is expected at this point as the myelin sheath has to repair itself before nerves can start their repair process. And since nerves grow at the rate of approximately 1 mm/day, the nerve repair can continue for several years. I’m told that typically improvement is noted at the one year post sct mark. However, I have personally noticed that my numbness is not as far up the leg as it once was. I also still do not have reflexes back, but that is another thing that typically shows the first significant improvement at the one year mark. So everything in this area is as expected.
At the time I started the sct process; I could not walk unaided and was fast losing my ability to care for myself. My pain was always very high and I was also fast losing my ability to work. I am now back at work full-time, can walk 2-3 miles and/or bike 5-8 miles each day (can, not always do, smiles!).
Before sct, I had no energy and everything I attempted to do would cost me in further pain and even less energy. Now my energy level is coming back. It still takes me longer to accomplish things than before I got sick, but I can do most things again! I am back working in my garden and getting ready to plant my spring crop! I can do my projects around my home, recently completing complete garage clean up, shelf installation and organization.
I call this my R&R year – Repair & Renewal – and have so much hope as I am finally in remission and will continue to improve!!!
I continue to wish each and every person the treatment path that brings them the best result.
AnonymousAugust 7, 2012 at 11:16 am
Nice work Linda! I’m almost 3 years post SCT and getting better and stronger still.
August 17, 2012 at 11:17 pm
glad for you both 🙂 it’s so nice to hear of the cidp success stories. If I remember correctly Alice, you had axonal damage. So there is hope that, that can heal. I liked your posts explaining your healing process, it was very informative.
AnonymousAugust 27, 2012 at 6:35 pm
I am now one year post sct and continue to get better all the time! While I do not know if I will “heal” 100% (have lots of nerve damage), I do believe I am “cured”!!!!! I still have some nerve issues and clutsiness, but so, so, so, so much improved, it is all GOOD!!!! Best wishes to everyone to find the treatment path that works for them!
AnonymousApril 29, 2013 at 12:02 pm
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AnonymousMay 9, 2013 at 3:49 pm
Hello there, Ted here from Philippines.I’m so glad having read your post.
I find it very informative and inspiring. I’m starting to learn more and
more about CIDP. I have been carrying this illness since October 2010. Being in
the Philippines it is so hard to find an experienced CIDP neurologist.
I had been with lyrica 150mg before being diagnosed on CIDP.
Though with lyrica I was still deteriorating. Deterioration
went on due to wrong diagnosis. Until we decided to go to a neurologist
and had a lumbar tap, there it was found out that I have CIDP.
I have been taking steroids (Prednisone)for more than a year
from 60mg/day down to 20mg/day and Gabapentin at 1,500mg/day.
Pred stopped the deterioration while gabapentin minimizes the numbness
and the tingling. However, I don’t see any improvement on my strength.
Now, numbness and weakness are in both legs but more on the left.
Deterioration affected approximately 75%on on my left hand and
50% on the right. I can still stand and sit on my own but cannot
walk without a walker. My wife assisted me in going to and from
the bath room.
I’ve been searching a lot in the internet to find a local CIDP neurologist
but could not find any. My present neurologist is not fully equipped with
the knowledge of this. Sometimes, its my wife who gives the idea first before
she talks about a treatment. But with God’s help, I believe I will find one soon.
Please help me pray that I will. How I wish to go to USA for the treatment
but I could just not afford for sure.
AnonymousMay 14, 2013 at 8:22 pm
That great to hear about people who our getting better and returning back to a normal life. I came down with Miller Fisher Syndrome back in 2004 and after IVIG treatment started getting better after 7-8 months I was back to a normal life. than in 2009 started getting was nerve pain and was put on a ton of meds. Now the pain is still here and no one seems to know why. I am also having to look at scooters to get around, can not even go to the zoo with my family with out become total wiped out when done with the zoo. So it is always good to hear about people who are getting better
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