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JP's Life With Multiple Sclerosis - PPMS
United Kingdom
Приєднався 22 сер 2013
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!
Swimming Exercise (for MS) in the Back Garden!
Swimming Exercise (for MS) in the Back Garden!
Переглядів: 998
Відео
2nd Covid Jab and My MS + Quick 2021 Update.
Переглядів 7033 роки тому
I had my second Covid jab yesterday and last night was a rollercoaster. Here are my experiences and a short update.
HSCT for Multiple Sclerosis (PPMS): Home #18 - 1.5-Year Update!
Переглядів 4,4 тис.3 роки тому
This is the 1.5 year update concerning my recovery after receiving stem cell treatment (HSCT) for multiple sclerosis in Russia. I have primary progressive multiple sclerosis and this was pretty much my only option. Check out my update here from my 6.5-month MRI back in Russia. Blog: hsct4msexperiences.blogspot.com/
HSCT for Multiple Sclerosis (PPMS): Home #17 - 7-Month, Post-MRI Update
Переглядів 1,4 тис.4 роки тому
This is the 7-month update concerning my recovery after receiving stem cell treatment (HSCT) for multiple sclerosis in Russia. I have primary progressive multiple sclerosis and this was pretty much my only option. Check out my update here from my 6.5-month MRI back in Russia.
MS Fatigue Management #2 - Sleep Hygiene
Переглядів 2884 роки тому
I am running a series on coping with fatigue when you have MS; this video deals with the topic of a good sleep hygiene.
HSCT for Multiple Sclerosis (PPMS): Home #16 - Back to Work! (4.5 Month update)
Переглядів 6554 роки тому
This is the 16th part of my home diary series, having returned home to the UK. This is my 4.5-month update and things are going pretty well. I returned to work (teaching) this week and this details some challenges therewith.
MS Fatigue Management #1 - Posture
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I am running a series on coping with fatigue; this video deals with the topic of posture.
MS Fatigue Management - My Fatigue
Переглядів 1874 роки тому
i am running a series of videos dealing with fatigue management for MS sufferers. Before these, I thought I would talk a little bit about my experience of fatigue.
HSCT for Multiple Sclerosis (PPMS): Home #15 - 3.5 Month Update
Переглядів 2255 років тому
This is the 15th part of my home diary series, having returned home to the UK. This is my 3.5-month update and things are going really well. Recent blips, I hope, are heat-related due to a very hot summer month,
HSCT for Multiple Sclerosis (PPMS): Home #14 - 2 Month Update
Переглядів 1955 років тому
This is the 14th part of my home diary series, having returned home to the UK. This is my 2-month update and things are going really well.
HSCT for Multiple Sclerosis (PPMS): Home #13 - 3rd Bloods
Переглядів 1655 років тому
This is the 13th part of my home diary series, having returned home to the UK. Last week, I had my third blood test and results - here they are.
HSCT for Multiple Sclerosis (PPMS): Home #12 - Update One Month+
Переглядів 2095 років тому
This is the 12th part of my home diary series, having returned home to the UK. Last week, I had my second blood test and results - here they are.
HSCT for Multiple Sclerosis (PPMS): Home #11 - Second Bloods
Переглядів 1155 років тому
This is the 11th part of my home diary series, having returned home to the UK. Last week, I had my second blood test and results - here they are.
HSCT for Multiple Sclerosis (PPMS): Home #10 - Starting to Get out & About
Переглядів 1325 років тому
This is the 10th part of my home diary series, having returned home to the UK. This weekend, I ventured out for the first time to meet the general public! I talk about these experiences of starting to get out there and my general recovery. Look, I think my hair's starting to grow back!
HSCT for Multiple Sclerosis (PPMS): Home #9 - GP Appt & Liver/Kidney Function
Переглядів 1685 років тому
HSCT for Multiple Sclerosis (PPMS): Home #9 - GP Appt & Liver/Kidney Function
HSCT for Multiple Sclerosis (PPMS): Home #8 - 1st Meeting with MS Nurse
Переглядів 4575 років тому
HSCT for Multiple Sclerosis (PPMS): Home #8 - 1st Meeting with MS Nurse
HSCT for Multiple Sclerosis (PPMS): Home #7 - Walking
Переглядів 1,8 тис.5 років тому
HSCT for Multiple Sclerosis (PPMS): Home #7 - Walking
HSCT for Multiple Sclerosis (PPMS): Home #6 - Blood Test Analysis
Переглядів 2285 років тому
HSCT for Multiple Sclerosis (PPMS): Home #6 - Blood Test Analysis
HSCT for Multiple Sclerosis (PPMS): Home #5 - Tips & Blood Tests
Переглядів 1525 років тому
HSCT for Multiple Sclerosis (PPMS): Home #5 - Tips & Blood Tests
HSCT for Multiple Sclerosis (PPMS): Home #4 - Cleanliness & Visits
Переглядів 1445 років тому
HSCT for Multiple Sclerosis (PPMS): Home #4 - Cleanliness & Visits
HSCT for Multiple Sclerosis (PPMS): Home #3 - Urine and Temp Tests
Переглядів 1245 років тому
HSCT for Multiple Sclerosis (PPMS): Home #3 - Urine and Temp Tests
HSCT for Multiple Sclerosis (PPMS): Home #2 - Early Reactions
Переглядів 1985 років тому
HSCT for Multiple Sclerosis (PPMS): Home #2 - Early Reactions
HSCT for Multiple Sclerosis (PPMS): Home #1 - Leaving the clinic
Переглядів 1985 років тому
HSCT for Multiple Sclerosis (PPMS): Home #1 - Leaving the clinic
HSCT for Multiple Sclerosis (PPMS): Diary #26 - Catheter Removal!
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HSCT for Multiple Sclerosis (PPMS): Diary #26 - Catheter Removal!
HSCT for Multiple Sclerosis (PPMS): Diary #25 - Final infusions/Rituximab
Переглядів 7305 років тому
HSCT for Multiple Sclerosis (PPMS): Diary #25 - Final infusions/Rituximab
HSCT for Multiple Sclerosis (PPMS): Diary #24 - Out of Iso and other Things...
Переглядів 1545 років тому
HSCT for Multiple Sclerosis (PPMS): Diary #24 - Out of Iso and other Things...
HSCT for Multiple Sclerosis (PPMS): Diary #23 - Hair Loss & Almost out of Iso!
Переглядів 2625 років тому
HSCT for Multiple Sclerosis (PPMS): Diary #23 - Hair Loss & Almost out of Iso!
Hi JP, I hope that you are doing well.. One question - how much money was needed for HSCT in Moscow ? I wish you all the best !
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.
Thanks brother really appreciate the information. Thank you so much. Sending you blessings
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
What is your EDSS score now after the HSCT? And what it was before the hsct?
Employment for disabled folk is a BI'**H... I was a BUSINESS BANKING ANALYST for Santander... BUT got dismissed due to the Multiple Sclerosis 😮
MS is uniqe as ginger prints
i wonder if hes dead now.
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 😥
Do you have hitchhikers thumb? I am looking into hypermobility in joints.
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.
IDK, but this might interest you. ua-cam.com/video/KVAogG8m2iI/v-deo.html
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.
When I get energy finally sometimes I don't wanna waste it on cleaning up. But yeah glad I don't have a PS 😊
How are you holding up in 2023? Is the HSCT keeping the monster at bay? Also, have you considered taking Ocrevus?
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 getting HSCT in 4 months. PPMS edss 3.5 ish
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.
God bless you & all in Russia!
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..
I personally believe she has had hsct done; I will search that drug as i don’t know about it
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.
As a freelance musician my obligations come in spurts therefore i need to make an effort too avoid stagnation when i have too much time.
The distinction between what is an energy deficit and what is psychological motivation is the take away. Uplifting. Useful. Thanks brother
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..
So putin saved you lol my goodness
Better go back to church
In the end days it will feel like scorpion stings
You were lucky to survive
Do you not understand that you have been removed from god
Has this guy got downs?
I’m lost with all these acronyms!
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.
Just moved house over Christmas just woke the mrs the dog kids and the new neighbours up lmao! 😂😂😂😂🍻
Only just come across this channel, with my job you would laugh. Thanks for putting this up, you're a good man Jonathan 🍻
Yes - how are you these days? Great video by the way =thanks for sharing your great tips too.
After HSCT you stopped conventional treatment??
Hello , i am a new fan from morrocow , i have the RRms , i want to treat my ms by Hcst ib russia , i want your advice pliz
Love your videos. Quick question had you lost any muscle before treatment?
“If you want to look particularly weird” - that is awesome! Lol!
Is he a special person?
Doing well, fine to see.
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.
Good work
Nice job!! I have RRMS and you’re skating compared to me 🙂
This summer has screwed my walking. I hope I recover some!
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?
The question would be how good is this data? What is the success rate over a large number of people? Etc etc
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.
Good question. I've written about this, sort of , here hsct4msexperiences.blogspot.com/2019/04/the-case-for-hsct-my-rant.html?m=1
And I would do it again and advise every sufferer to get it