Reply To: SCT… What is the success rate.

August 28, 2012 at 12:17 am

Rick D

OK – remember, you asked!  LoL!

Before sct, I had numb legs/feet/hands and a few other parts.  I had high pain all the time and I do mean HIGH pain and ALL the time .  I felt like my arms/legs each weighed a ton and movement was very difficult, it was like gravity was really ramped up and trying to defy it by moving was always a challenge.  I felt like the bones in my feet were made of spun glass and each step I took, it felt as if the bones were exploding from within and shards of glass were coming out through my skin.  Whenever I rested, I had like full body restless “leg” syndrome with extreme cramping (head to toe, curled up everywhere, neuro said was muscle seizures, not cramps) – they would hit so hard and so fast I couldn’t catch my breath (they would hit my diaphram and I had to concentrate on breathing).  They could last for up to 10 min of agonizing pain, then get a short reprieve of a minute or two, then seizures again lasting on and off for hours (the worst attack lasted 10 hours).  Since all my muscles seized at the same. I would have instant vomitting and more.  I would get zaps and zings and buzzing sensations in my muscles.  I had extreme fatigue and took frequent naps but still so fatigued.  I was on weekly IVIG treatment (and was about to go twice a week), was on Imuran and 8 RXs for pain mgt.  My life was very focused on only a few things which made my world feel pretty small.  I had trouble concentrating.  Lots of balance issues – fell down all the time, a pebble would cause me to crash to the ground.  Was in a wheelchair if I had to walk more than from my house to a car.  I was still working but mostly teleworking and that was ALL I could do.  Go to work, come home and pass out fully clothed.  Wake up around 2 am, clean up, back to bed and then on to work.  Fridays working from the infusion center while getting my IVIG. Weekends were lying up in bed trying to gain enough energy to go to work again … horrible and dismal and was getting worse.

It’s been one year since my sct.  I’m working full time and some weeks more – I went back to work 6 weeks after getting out of the hospital.  I started the first two months back working 6 hour days, then full time.  I still have energy left over after work to play with my pets, go to dinner with friends, go dancing, go visiting, have company over … etc.  I haven’t had a treatment in over a year.  I’m off ALL meds! I can walk and walk and walk (it feels so good!).  I exercise 2x/day Mon-Fri.

I still have nerve damage and always will have some as there was so much … so I’m still numb in spots but that is improving.  That is an area I expect to get good recovery but nerves are slow to grow/heal (1 mm/day), so this can continue for years.  I do have more feeling in my legs and arms.  I still can trip over a stupid pebble (took a tumble in my driveway today – sigh) but that’s on me for not watching where I step – anyone with numb feet for whatever reason knows better! But I’m feeling so good, I just get careless.  I’ve always been high energy and that hasn’t fully returned but I’m 8 years older from when my cipd journey began, so that is probably a contributing factor!  But I have a very acceptable level of energy and can be very active pretty much as I want as long as I get 8 hours of sleep each night (used to only need 6).  I still have cramping, but it is cramping and not seizures and there is a BIG difference!  So, while I do consider myself cured of the CIDP, I am not completely healed from the damage it did.

However, this is a lot of progress for 1 year and I have to keep going back to be tested annually for five years.  And since they continue to see results for several years from other sct patients, I believe I will continue to improve.

This was the best decision I made.


But all in all – soooooooooooooooooooooooooo worth it!  I’m enjoying so much more now