Well it's all done and dusted in Chicago now. A caught up with a couple of people in the ward going through the process at the moment, I had lunch with Brian Hinkle, a fellow CIDP patient who was there for his one year follow up and of course I had my appointments with Dr Allen and Dr Burt. I was there for a week so I also had time to catch up with some old friends, visit some of my favourite places and do a couple of things I wasn't able to do a couple of years ago.
However, although I would have to classify the trip as a success I still feel a little disappointed. Allow me to elaborate. This is my second evaluation. When I had the first one the results were nothing short of spectacular. Although they still demonstrated a "severe neuropathy", the improvement was marked and I felt a great deal better for it.
In this my second evaluation I was hoping that this steep upward curve would continue to climb. I was expecting improvement albeit not as much but alas, there was none. On the plus side, there was no degradation either. But still, I couldn't help but be a little disappointed. The neurological report from the nerve conduction test still said severe neuropathy although I don't feel like it. The improvement plateaued and there it has remained.
It's not all bad though. For the first six months post HSCT I had significant marked improvement. This is something that had never happened before and since then there has been no improvement but most importantly, there has been no deterioration and although nobody can predict the future entirely the general consensus is that the stability will continue.
This actually solves the biggest issue I had prior to HSCT which was the uncertainty. I never knew what the next stage in my disease progression was going to be or when. Now I know what to expect. I can move forward knowing what the future holds.
The outcome has far exceeded what I had hoped and the disappointment is relative to my results at the six month stage. Was it all worth it. You Bet! I'd do it again if I had to but for now I'll simply temper my own expectations and enjoy the improvement I never would have had without HSCT.
Until next time, stay well:)
Eddie Nash here. It is always good to hear from you sir! I am not a doctor although at times I almost think I have become as or maybe more educated about HSCT and CIDP/MS. What I am picturing in my mind is that the HSCT stopped the ACTIVE DISEASE and the active disease was what was causing the worst of your symptoms. Now that the active disease is stopped and you can run, dance or whatever made the 6 month check up so dramatic. But the residual damage to the nerves etc will take longer to recover if it ever does. They mention some very small measure/time that the nerve myelin regrows. And if the nerve axon is damaged it may never regrow. So that is dr Nash's humble opinion. SO take that with a grain of salt if you will. I hope you enjoyed your return trip stateside too! Wishing we were there to see you but money get's in the way!
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