stem cells CMT - navigating oneself safely

stain4th

New member
hi all as per my intro my name is wayne i was diagnosed some three years back with Charcot Marie tooth disease type 1 , i have followed the progress of others on this site but they are not exhaustive .

navigating oneself through all the literature on the web is confusing and exhausting , there appear to be so many different paths one may take and deriving a clarity forward most difficult for the novice .

I was wondering if i may please lean on you for some help in the right direction . The research that i have done suggests that stem cell treatment for CMT is at best encouraging but by no means that effective . That said i spent the first 39 years of my life not knowing i had and its onset i believe has been worsened by the use of meds contraindicated for CMT . Subsequently if i could simply improve the quality of my life and slow its progression i would be satisfied . eg Recently i developed essential tremor for two years now i have had insomnia etc . i wont labor on .

Where do i start ? There are i understand 85 clinics worldwide offering cell therapy , added to that very many different types of cell therapy with each clinic claiming its own unique system or delivery .

I understand that research suggests best practice would be meneschenal (forgive my spelling ) i have contacted the clinics most convenient to travel to Seychelles ,two in Israel , medra in Germany and Stemcellschina resultant from treating a Frank Potts(on u tube who if i understand correctly had meneschenal. ) Has anyone navigated these waters ?
 
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