My name is Jonathan Pearce; I was diagnosed with Primary Progressive Multiple Sclerosis in November 2018 and, without any options on the NHS, decided to go for HSCT (stem cell) treatment in Russia in March 2019. This channel details my journey through that treatment and beyond. Please spread the word - HSCT for MS - and subscribe!
Hey JP, 64 male from the states diagnosed wth MS here originally from Boston living now in Florida (I know way too hot here in Florida, long story) Just wanted to thank you for the update and information. Diagnosed 10 years ago and ms is now starting to progress.
Thank you for your video; I’m so glad I have seen this. I am thinking to go to India but I will research Russia, but not sure now with the war and stuff
Hi Jono met u in Moscow at your checkup. How are u getting on now me great for two years all came back gradually begging for treatment eventually on kesimpta. Doc says I'm still rr but I'm afraid it's gone sp. Have regrets not about hsct going out of the system I look back now and think I bought in to it all and took risks. Such a shit hand. Me eldest of 8 and I'm only one with it. In family. Husband health investigations going on 😥
2 years post HSCT in Puebla as a PPMS patient... My symptoms became worst and I believe that therapy accelerates the disease progression. It may stop it for RRMS patients but I don't think it is convenient for PPMS people.
I was hoping you would talk more about your actual experience in Russia with treatment and clinic. Were you able to communicate with doctors? What the process is like?
that's about my gait/edss and trajectory over if pushing beyond 1000m. and i'm through my chemo stage entering neutropenia... nearing the end of the hsct 28 days at Clinica Ruiz, Mexico. doing fine so far :)
I wonder what Frank's dose of vitamin D3 is? He describes it as high.I wonder how much is he taking exactly I wonder ? I have PPMS 3.5 ish and am currently (sept12, 2023) in neutropenia in Clinica Ruiz's HSCT programme.
hsct for ppms ! It's questionable whether progression is halted still. I sure hope his progression is halted but it's hard to believe it has.. Although there are some PPMS success stories, but how many?
My son is around that age and it touches my heart that hes so willing to help you. And thank u for ahowing the foot drop and the limp. My limp is more prnounced. I have comorbidities or it could all be this. Do you have any hip pain or burning? How is hour neck? Do u know where your lesions are? Sorry a lot of questions. Im proud of you, dont guve up! Oh my foot drop is on same side.
i also teach - more in the music field and i hope to continue especially teaching private lessons. My wife is a part time public school teacher which is a whole other level of exhaustion I know from the chronicles ans from a small amount of in class volunteering. HSCT in Mexico is pending Aug 28, 2023.
Hoping your life is good JP. Of course I'm hoping the HSCT had a good effect in stopping progression long term. Of course the issue of 'smouldering' previously done damage is a tall order. I have PPMS as a 58 year old jazz musician. Of course I can't help wonder why I cant find these videos past the 1.5 year mark.. In any case u might welll be more focussed on your life as the Tippling Philosopher.
i'm 4 months away from HSCT in Puebla, Mexico. PPMS. EDSS about the same, I'm taking note! I'll spend time on the eliptical trainer as to be as buff as I can as I head into a similar recovery time frame. If the gods (Who probably don't exist) were to offer me a choice of staying EDSS 3.5-4 for the uture or risking being a 'non-responder' to the pending HSCT I'd say hold it at 3.5-4 - i'd cash in my chips... but those kind of gods don't exist and that choice/gamble is not an option on the table for me.
I understand that Dr. Terry Wahls had earlier recieved Novantrone which IS a chemo drug/dmt for MS.. Is that what is meant here by her receiving hsct? it would be good to clarify.. peace..
As a 58 Jazz musician with PPMS, going to Puebla in Aug 2023 for HSCT, I appreciate all updates. I'm still a fan of the Tippling Philosopher though by the way!
Thanks so much for sharin JP. Very happy you seem to have plateaed. I'm hoping to go to RUIZ for HSCT for PPMS. I'm considering discontinuing ocrevus as it has not halted, but rather seems to have slightly but clearly accelerated progression. I'm 58. I understand that Mexican MS HSCT is non myeloablative similar to Russia's but that the the Stem bags aren't frozen like in Russia. I'm not sure exactly how, or why, their regiments differ slightly.
Lots of appreciation from toronto. Here, ocrevus has the monopoly on ppms. Meanwhile, mexico and russia hsct is practiced.. now, in 2023 im going to fundraise for Ruiz hsct in mexico. Thank you for sharing a detailed and articulated look at ppms, hsct..
I am working on trying to get this treatment in India. It was so amazing to see you go through part of the process. The heaviness in the chest is what I hear you and most people say when the stem cells are getting reinfused. You brave soul! Praying I have the courage and the money to do this. God bless you.
Hi, I had the same experience with Biontec. Was horrifing. My bodytemperarture raised to 38,9 degrees. For three days I was Knocked-out. But all went back to my normal MS condition.
Hi, a german women write that she became 1994 PPMS and than 2000 in Wheelchair. 2001-2003 she becam a therapie MITOXANTRON and after that her progression stilled. No becoming worser. Maybe other PPMS patients must try the same. Why the doctors do not try this?
Hello Would you do it again? If this HSCT is so good why not much more people do this in Russia? Normally if it is sooo good thousands should do this. Why only a few PPMSler do this? What is your thoughts? Thank you for your answer.
