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..
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!
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.
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.
Good news, I'm very happy for you. It'll be interesting to see how the next couple of years go considering we can have periods of stability w/o treatment. I hear you on the cognition! Wishing you the best with your job search and take care.
Hi Sir. Thanks for posting these. Also PPMS on this side but haven’t yet done HSCT (stumbled on your channel in the middle of research). Appreciate the broad summary of how you are handling things and taking control. Oh aye- I also follow the OMS diet and agree with your “cheese is great”- the only thing I miss:). Onwards and upwards sir!
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 from Spain!!! Congrats!! How long have you been with Ms?? Stay strong!! Hope to have HSTC in Mexico if not possible in my country, Spain. Saludos!!!
Yeah - so lockdown has been a real struggle for muscle deconditioning and sitting on my arse. Definitely need to up my exercise schedule... Think it has negatively affected my MS.
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?
JP. You can consider the drug zidovudine: www.sciencedirect.com/science/article/pii/S2211034818300828 I don't have MS but with dealing with ME/CFS I came across that and some of the foremost researchers are already aware. Anyway. Goodluck to you mate!
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 😥
Hi JP, my son has PPMS now he is on wheel chair. We are thinking on HSCT for him. How much it costs roughly and how long you have to stay in Moscow. Finally can you give me the address of the hospital please. Thank you.
So, 30 days as an inpatient - it's why I would advise Russia over Mexico. The team are AMAZING. The hospital is superb. About £40,000 - but it depends on exchange rates. A lot of fundraising but worth it. hsct-russia.com/
Thank you for the update. I am in the process of getting Dx. May I ask how long it took you to get Dx and what made you think you had ms what were your symptoms?
So my first one was the loss of feeling in my fingers. They did loads of tests and gave me physio but nothing worked b/c it was neuro! Then was getting dizzy doing exercise. Possibly next was needing to urinate more, and then my balance started going and I found it weird and hard to run. Check out my first videos on diagnosis story and what I had to do to get diagnosed.
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..
So, how much did it cost you? Do you have the feeling your MS is stopped now, or just stopped for a moment? And how long did you have to stay in Moscow for that?
30 days in Moscow. Moscow is great because you are an in patient. I feel it has worked and my MS has stabilised. But how long for is the golden question. I guess you are only as good as your last week, right? It cost about £40,000 - a lot of fundraising!
HI JP - hope you are doing great! My son was recently diagnosed with MS and is leaning towards HSCT as his first and only treatment. As he researches this option and specifically HSCT in Russia a couple of questions - was your Chemo conditioning a myloeblative or nonmyloeblative ? Thanks in advance and take care. jeff
Sorry - late to these questions. Is he still considering it; money aside, it's a no-brainer for me. Russia does non-myeloablative treatment, which is safer iirc.
