I have just read the following on a HSCT forum and i think it would apply to CTP too and explain why some do not see the dramatic improvements others do, below are comments by an MS patient who underwent the HSCT procedure. i think its worth adding the graph and quotes to the files section for current/prospective patients if Dr Doug feels these rules are also applicable to CTP:. I was going to have HSCT in May but changed my mind due to the unlikeliness of potential improvements for someone with an EDSS 6.5 dx 12 years ago and having low inflammation. As like CTP, in HSCT highly inflammatory rapidly progressing or R&R MS patients seem to improve most. The three biggest factors that are predictive of post-transplantation outcome probability are #1) Morphology (beneficial outcome skewed towards relapsing cases vs progressive MS at time of transplantation), #2) EDSS (beneficial outcome skewed toward people that are ambulatory with lower EDSS at time of transplantation) and #3) Longevity (beneficial outcome skewed toward those hat have a shorter duration between disease onset and transplantation). The following graph includes the first two factors that are reasonably well understood from the clinical trial work performed to date but the third factor is not as well understood from a quantitative standpoint; just the general trend is understood. Be sure to read the caption with the graph. Additionally, symptomatic improvements do not typically materialize immediately following HSCT. Instead post-HSCT symptomatic improvements most often follow a temporal pattern that goes like this. . . . . People notice improvements at +12 months following HSCT, At +18 months the improvements become obvious, and at +24 months the improvements become most substantial. Dr. Burt describes this phenomenon in the first 45 seconds of the following video. . . https://youtube/watch?v=msYTOSo4jZo&feature=channel Cerebellar (dys)function(s) are usually the first/most complete symptoms to improve. Cerebellar functions are most non-motor functions (does not include muscle control) and includes things such as temperature (in)tolerance, visual disturbances, dysphagia (swallowing), dysarthria (speech), ataxia/vertigo, parasthesia, etc. The improvements i have seen since my CTP in July all occurred straight after treatment, i just didnt recognise them till weeks had past: 1) dysphagia gone 2) appetite has normalised 3) dysarthria gone 4) walking strength/distance on treadmill has improved on rare occasions but isnt sustainable
Posted on: Mon, 22 Dec 2014 20:23:42 +0000
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