You must be proud of your self Deepa because you made the decision to do this trial, so don’t regret it and be so hard on your self. I met people in the Facebook who found improvement after 5 and 8 years after the treatment, so don’t rush it. I hope all the best for you in the future ❤️🤞🏽
Thank you for your well wishes. Im so sorry, I must have missed this comment. I really hope I have some improvements. Currently I’m not doing too great but I’ll still keep fighting and working to keep whatever is working. 😊
I've had M.S for 18yrs. Over the first 3yrs I had numerous relapses and was badly disabled and using a wheelchair. I was started on Mitoxantrone and Copaxone. This is a chemotherapy agent combined with a disease modifying therapy. I went 14yrs relapse free and through hard work recovered to the extent that I achieved more in that 14yrs than in 30yrs of good health. I would advise anyone with active M.S to take a chance on the most aggressive treatment available to stop relapses and the accumulation of disability.
Hi Ronny, thats amazing that copaxone and mitoxntrone worked for you. I was on avonex for a couple of years and then tysabri for about 4 years. When tysabri was no longer helping I tried hsct. I feel now, I should have waited for Ocrevus. Who knows what the results would have been. What works for some, doesn't necessarily work for others. I had a friend very dear to me who was on copaxone for a while, kept relapsing so went to tysabri and then still relapsed. We just hope and pray we all stay as healthy and mobile as we can. God bless you
@@DeepaThakrar Thank you. In some ways we're lucky there are so many options now and so much productive research. During my years in remission I avoided all things M.S related so I'm heartened by all the progress. Hopefully now some progress will be made on central nervous system repair.🤞
@@DeepaThakrar Dear Deepa, if I may ask, are you on any DMT now (after you came off Tysabri)? A dear friend of mine who's been on Tysabri for nearly a year now was told by her neurologist that she'd probably be switched over to Ocrevus after Tysabri. My point is, if you are not on any DMT now, why did you decide to discontinue DMT? Anyway, I realize that to be able to make any informed decision having MS is a puzzle - what works for some doesn't work for others. You go on DMT and you just wait and see what happens. Therefore, having people with MS sharing their experiences of living with the disease, effects of DMTs and other treatments on them on YT, like you do, is a real blessing. All the best to you!
I'm in the same boat as you. I too had the transplant in 2019 (November). The spasticity is definitely my main issue coupled with weakness. Prior to the transplant, I was able to walk to and from the toilet with a walking frame at home. Now I can no longer move my legs and I'm on the wheelchair all day. I'm not sure if we will eventually improve as I have read that some people do get better after 2 years. Same as you, I probably wouldn't recommend anyone with a high level of disability to go. I wish us well and hope that a cure will be found in our lifetime. Love and hugs to you. ❤
Thank you so much for taking the time to leave a comment. I’m so sorry to hear that you too as well as many others are in the same boat with spasticity and stiffness. I can’t tell you how many people I’ve met along the way who have really struggled after having the transplant. Again we can all live in hope that maybe with the strength we may one-day have a cure to fix all our issues. I wish you well for the future and pray that you remain as well as you can be xx sending prayers your way 🙏🏼
I had HSCT at Clinica Ruiz in 2016 and I am very glad I did. I have Progressive MS. I knew going in that HSCT would not repair myelin. I did receive several good benefits from it. My slow working brain and brain fog was completely eliminated just days after getting my stem.cells back. I had increasing overwhelming fatigue as the MS progressed and that too was completely eliminated along with several other benefits. My mobility has decreased and other symptoms have increased due to the damage that was already done but I have no new symptoms. I am very glad I went to Puebla and had HSCT.
I'm sorry to hear that Hope you will see a result someday.may I pls ask why they refused you in UK? I am waiting for an answer from the team doing hsct in uk atm and am quite nervous Thanks
@Deepa Thakrar sorry I forgot to ask,so your neurologist referred you and they refused isn't it? If you are interested and need someone to chat to from time to time I would be happy to keep in touch xthanks again
@@ancadi4ever hi sorry for the late reply. I did ask my neurologist to be considered for hsct. An mri was done and I did not meet the criteria and so I decided to have it done in Mexico. One thing to remember about hsct is that you have to work extremely hard with physio to get results. It’s not a miracle treatment where everything radically changes for the better. Good luck in your journey. If you email me deepadavdra@hotmail.co.uk I can send you my details to keep in touch x
Thank you for this video I too had chemo in 2019 I also got worse for about 1 years after finishing however I feel I bottomed out certain symptoms have improved others have not but if you had not done this chemo You may have gone even worse to the point where you are in a hospital because this there is no end to the damage that MS causes so you I think the chemo whether it's maven clad or HSC T will is worth doing because you because if you don't do it you probably will continue to get worse
Thank for your comments Rob. You maybe right. Unfortunately MS is so unpredictable, who knows how our disease will progress. With or without medication. Unfortunately I’m not doing so well, but I’ll keep in fighting, I hope you are well and managing your symptoms. Best of luck to you and stay strong 💪🏽 x
Hearing your view I wonder if this is worth it? both finacially and physically. Or perhaps if the treatment is best before serious damage occurs? Do you feel it's paused your symptoms from develpoping further, honestly was it sold a a cure all, the literature is overtly positive and I wonder if it's excessivly overly rosey in its outlook. Hope you're doing okay. I've only just started this 'journey' a phrase I've come to hate already.
Hi Mike, so nice to hear from you. Firstly I’m sorry you’ve had to start this journey. When I comes to my symptoms I don’t feel it’s paused them but I don’t feel I have got any new symptoms either. I think from the symptoms I had before hsct they have just progressed over 3 years. My right arm and hand have become weaker and my walking has progressed to being in the wheelchair and barely managing 200 steps a day. Pre hsct I was able to walk with 2 walking sticks, but then I got sepsis and o upgraded to a Walker. Ever after hsct o was managing the Walker but gradually it has become harder to move my legs. I have heard many positive stories of successes but these are mostly for those who catch it early and have the treatment but when they get sick then alot of old symptoms come back temporarily. I also have met many people/friends that feel far worse than they did. I’m not here to agree or disagree with the treatment but to tell you my experience and how it has been for me. I guess what you would need to do is ask people experiences in the ms hsct forums to find out their experiences- good or bad. On the whole I’m positive, I work hard at my business and my health and can honestly say I’m happy. I know many people who are far worse than I am, and for this I’m grateful. I wish you all the best in your journey. Please message me if you have any more questions 😊
Hi Deepa, your honesty is deeply appreciated ❤️. THANK YOU so much for your thoughts and experience with HSTC. I emailed you asking for a couple questions. I will also post them here in case you would rather answer on TH-cam so other people can watch your answers: 1) How much does it cost in the UK and other places such as Mexico or Thailand? I couldn't find any details on that 2) Up to day. Have you had any more relapses after the treatment with stem cells? Do you feel it helped you get better? Would you do it again if you had the chance to go back? Best regards, Jorge.
Hi Jorge, Thank you for taking the time to watch my video. I’m not actually sure how much it costs in the UK. You can also have it done in Russia. If you search hsct Russia. Since having the treatment I personally do not feel it has helped me. I would actually say I’m worse than pre hsct. I’ve also come across many people that feel worse after having it done and only a handful of people that have had really good results. Stiffness is the main thing that people suffer with and being stiff makes you unable to do things. I now spend most of my time in the the wheelchair as walking is so hard. I know that back then, before having treatment if anyone told me not to do it I probably would’ve dismissed what they were saying. There are so many groups on Facebook that tell you about all the positive things that happen after HSCT, which gives us hope and makes us believe that this is the only answer. What you don’t normally see on these groups, is all the people that have had issues after it. Mobility being a major one!! I’m not going to say that it doesn’t work, but for me and the people that I know of and who I’ve come across, well most of them it hasn’t helped them. Would I do it again if I was given the chance? No I wouldn’t and unless you are in your early stages of a MS, I wouldn’t recommend it to others. Those who get it done early have a better chance. My last relapse was actually in 2014, and I had my treatment in 2018. I’ve just had an MRI yesterday, so I should be able to answer that question once I get my results. But so far I don’t think I’ve had any relapses but really suffer quite a bit during coughs and colds. I’ll be happy to answer any more questions that you may have, and I wish you all the best in your journey x .
@@DeepaThakrar You are just wonderful Deepa. I deeply appreciate your thorough answer. I would love to know the results of your MRI. I will send you a message in a couple weeks😉 (if that is fine with you of course). I didn't know one of the side effects was stiffness. I read you can have more susceptibility to infections and a weakened immune system. As well as more proclivity towards developing future cancer due to the chemotherapy part of HSTC. Am I correct? Are there any other side effects? By the way, I don't know if you know Dr. Terry Wahls. She developed MS, tried all medicines and wouldn't improve. She started researching and changed her whole lifestyle (diet, exercise, elimination of toxines, etc.) She was able to come back from the wheelchair. Best of all is that her claims are backed up by scientific research. Her book is called "The Wahls Protocol". You may want to check it out 😃
I appreciate you doing this video as I'm ready to apply but have great concerns if this would help me. So many hard decision to be made that it's almost a gamble. I had so much hope and having to come up with the money is stressful. I'm so glad that I came across your video. Do you feel that the 80% effectiveness is correct, the facilities post?
Hi Candace, I’m so sorry it took me a while to reply. The question you are asking I’m afraid I don’t have the answer. Personally I think the transplant could work well for you but only if you catch the symptoms early. I believe that if you already have walking issues then this may not be the treatment for you. I’m only going by all the people i have come across along the way, since having their transplant who have found they have increased spasticity and stiffness, which when you combine those together, makes it difficult to walk and move your muscles. I’ll be honest, at least I thought I would stay the same in terms of my health, not become worse than I was before. Again it’s not just me, there are a lot of people out there with the same problem. I think it’s better to have both sides of this treatment and it’s after effects than one sided like they are in many forums. Just ask as many questions as you can. Please do not hesitate to ask any more questions if you have any. And I wish you all the best of luck with your MS journey x
Thank you for posting this. My sister has been diagnosed for about 6 years, she has a lot of flare-ups, painful, some left side weakness, she's 44 yrs old, good health otherwise. Wondering if she'd be a good candidate.
Hi Heather, Thank you so much for taking the time to watch my video on HSCT. I am now over three years post transplant, I’m not feeling too great. I feel that if I advise you to take the treatment for your sister, wouldn’t be an honest answer. I know of more people that haven’t felt great after the transplant to those who have had it done. What I would advise is to ask the right questions and do your research in all the hsct groups. I feel when you’re researching for stem cell transplant, you get a lot of good feedback from those that it was very successful for. However I feel there are a lot of people that don’t say how they actually feel and those that have declined since having the treatment. This could be because some of the admin group members don’t allow certain posts to be shared. I pray that your sister finds the right answers and help to lead a healthy life. If I was to advise anything in my long journey of a MS, I would say please ask her to keep an eye on her diet, do an allergy test at certain foods that you are allergic to can cause inflammation and most importantly to keep up any exercise that you she can. Good luck and best wishes xx
Hi hun, yes I’m afraid I still have to take it. Without it I’ve become very fatigued, I can’t even lift my legs, my hand gets weaker and my speech starts slurring 😬
Dear Deepa, You were on the right track with the HSCT, probably the rejuvenation was helping. My guess is you were feeling good at first, and progressively went back downhill. I think you where just missing a step! You see, if your Immune System(IS) attacks the Mylene, that's fine, stem cells will help in replacing that Mylene. However, the problem persists, your IS still goes for that Mylene. Thus, HSCT is treating a symptom and not a cause. A Prolong Fasting Session 5Days+, will allow you to turn over in Apoptosis many of those defective Immune cells. Upon the slow re-integration of the right foods, new Immune cells are generated from a cleaned out slate of DNA. Too boot, all cells of the body become more robust, including DendroCytes(DC). The steps are as follows, in the first 2-Days of fasting your glycogen depletes. Remember you're going from Insulin/Glucose as fuel to Ketones/Lipids. Your energy will drop, but it'll come back. Day 3: Autophagy and Apoptosis, the checking of cell integrity. Those unworthy... Apoptosis, programmed cell death, as their part are needed to continue cellular growth in these rough times. Day4: Un-spooling of DNA to repair broken parts and fix any methylation issues. Day5: To be sure you made it to the end. After 120hrs no food, start eating again, but small portions every 4hrs, and by small, I mean small for say 2 days... From there, Diet on LowCarb/HighFat(LC/HF) on an 18/6 Intermittent Fasting(IF) protocol for 3months. Repeat, another 5 days, and slowly re-feed(2nd 5Day fast is so much easier, but I bet your first one was a killer). This will fix Gut Health, Hormone unBalance, reduce Blood Pressure, etc. Good Luck to you. Take notes throughout the process if you try this, Google search Autophagy, get tools to monitor blood glucose, and go for it. I believe in you. My girlfriend has MS, she doesn't even want to quit smoking... Thanks for sharing your experience!
I’ll have to try this. Thank you for taking the time to leave a comment. I tried the Candida diet for 5 months back in 2016 but it didn’t make any difference to my health.
Thank you my lovely. I’m struggling a lot. Not walking anymore because it became dangerous and very difficult. My stiffness has increased and I am very reliant on my husband to take care of me. I will be releasing an update within a week or so to talk about my progress in more detail
@@DeepaThakrar that is so awesome that you have your husband next to you I'm sorry you are experiencing this please check with your insurance you can have a aid come out to you a few hours a week to help around the house I will be looking forward to your updates peace and blessings to you @Mswarrior🧡🧡🧡🧡🧡🧡🧡🧡
Thank you for making this; it’s hard admitting that something which you worked so hard for didn’t work out. It’s easy to get caught up in HSCT’s best case and forget that not everyone gets it. If you think the initial improvement when you got back to the uk was the rituximab, have you considered trying to get onto something like Ocrevus? Very similar drug, and (at least sometimes) covered on the NHS
Hi and thank you so much for having the time to leave me a message. Ocrevus was offered to me just before I left for Mexico. I could go on this if I wanted to which I may do in the future. It’s a little frustrating because they do say once you have hsct you don’t need any DMD’s, but I’m finding so many do go on Ocrevus after their stem cell transplant. I’m going to see if the MS gym proves to be beneficial and if not I will ask about Ocrevus. Thank you and keep well 😊
Hi, I'm spms and I'm on Ocrevus right now. I'm researching and reading about those whose had the hsct done. I currently have right side weakness can't use my right arm. But can walk using my Walker back and forth to restroom but not for long walks. I use my scooter for longer visits. Ocrevus for me and other have caused balance, ride side weakness, ect... because before I started Ocrevus I was able to stand and move around as I please. Ocrevus is definitely poison for me and others. Check it out on fb groups. I've been on Ocrevus for 4 years now I'm finding that this drug is causing all the side effects happening to me right now. I just had my infusion in med January 2022 and now I'm having trouble walking! I'm researching HSCT procedure with hope of it working for me. Thanks for your input. Idk... thank I'll try PT instead! Thank you so much for your honesty it helped me decide as that's a lot of money to just hope it works! Praying for your recovery and it working better for you! 🙏🏽❤
Thanks so much for this. I am newly diagnosed and terrified. I am having small symptoms at the moment nothing major but worried about progression so I don't have the money but wondering if I should really just get it done. So this is helped a lot that you are so honest!
I’m so sorry to hear you are recently diagnosed. Having this treatment is such a difficult decision to make. On one hand it may make keep you from deteriorating and getting relapses, but on the other hand it might make you feel worse. In all fairness, I’ve only met a handful of people who have had it done early on in their MS diagnosis. I think you would need to do some research and try and join groups who have had HSCT earlier on and see how they found it, and whether it helped them and also ask about those people who it didn’t help. Careful though, some of these groups are a bit biased but if you ask the right question you may get done honest answers. I hope you continue to stay well and healthy and good luck in your journey 💪🏽x Personally I think stress, a busy lifestyle and eating habits play an important role. Again this is just my opinion for me.
@@DeepaThakrar you’re amazing! Thank you so much for everything you’re doing seriously. You are making a difference to my life and I feel like I am not alone so thank you xxx
Wow that’s amazing. So happy to hear it worked really well for you. May I ask what your symptoms were before your hsct? Were you walking g with any aids?
@@DeepaThakrar getting better but trying to maintain my routine is at time challenging and I am blessed knowing that only myself can make these things truly SUCCESS THROUGH COMPLIANCE WITH THE PRACTITIONER....lol you know what I mean...hehehe
@@willjavidjohnsonosanlu7589 I know this is the hardest thing. In the beginning I was very good with the physio, but as time has gone on it has become harder. I wish I pushed myself more than I had. Even sometimes though, it’s still not enough, no matter how hard you try. I’m still doing whatever I can do, just to keep whatever I can still moving. Best of luck to you snd keep moving 😊🙏🏼
Hey , it would be interesting to see your walking , & your general mobility levels (if your'e up to it of course), this might also be really useful to you as a video diary (something to record how you are now , and you can look back on this in the future). Ive had RRMS since 2004 , diagnosed with highly active MS in 2007 , my walking isnt good either , i understand what you mean about stiffness , oh my god this is my main issue as well, along with alot of numbess in my feet, to the point where i cant feel the ground im walking on (Great hey!). your video is very useful in reminding us that stem cell treatment isnt always the "miracle must have thing", that we need to have to control MS. ........anyway fingers crossed you see some improvement , never say never , keep on pushing forward . Grace (Warwickshire , UK )
Hi Sapphire, apologies it my really late reply. I am going to do another video soon, one in which I will show my walking and mobility. I think it’s important for people to see that it’s not all rosy after stem cell treatment. I was so hopeful that this was going to change my life for the better but it just wasn’t meant to be. I’m still hopeful, and you can never say never. I may just one day by some miracle feel better than I do and improve. I continue to be positive and work hard on my physio. My husband and I started a new business venture so this keeps my mind occupied and busy. So many people have a false sense of this treatment being the best. Unfortunately there are Facebook groups that when you are enquiring about hsct, you see all the positive comments and not enough of the cons. I feel these groups don’t let you see what and how many people feel after the treatment. This I feel is very unfair as you should be able to make your own mind based on real facts and evidence. All we can do is try and hope for the best. I hope your MS is treating you well xx
@@DeepaThakrar Hello Deepa , thank you so much for your reply and for your kind words. I think its brilliant how you are highlighting your experience so that others can realise that stem cell treatment doesnt always guarantee success. Yes, fingers crossed you do improve , stay positive , and keep up with your lifestyle doing physio etc. I look forward to seeing your next video , until then stay well x
Hello Deepa , just thought I would send a message to see how you’re getting on. Hopefully you’re feeling better and stronger health wise. Happy new year .
@@sapphiresky7946 Hiya hun, Happy new Year!! OMG I know I still need to do an update… I’m so sorry. I’ve just been so busy with work that it’s been so difficult. I’ve also had on and off colds, and to be honest I don’t think I’ve been doing too well at all. My walking isn’t great at all and I will definitely add this to my video as soon as I’ve done it. I’m relying on my husband to get me around the house and to help me, I find myself getting stuck in places where I can’t move my legs and I now have a carer three times per week just to give my husband a little bit of rest. I’ll speak about more of my issues on my video which I promise I will do soon. I hope you are keeping well Take care hun xx
@@DeepaThakrar Hello Deepa , thanks for your reply, im sorry to hear that things havent improved much, if its any consilation im also stuck in limbo with my ms , like you my mobility is my biggest problem, i walk with a crutch and somedays even that is becoming increasingly difficult. Climbing stairs is a joke as my legs are just so weak these days! I will look forward too seeing your updated video when you get time. Im pleased that you have a carer , im sure the help they give you is so helpful. wishing you every success in your health , lets hope 2022 is good for us . all the best , Grace x
Hi, Deepa! Thank you so much for making this video. It is so easy to get caught up in the...Hope (I guess?)...when looking into aHSCT and I wanted to hear the complete truth of someone who had it. I am considering it but need to hear and weigh up everything before taking that huge leap (financially etc.) and don't want to get stuck in an echo chamber of "just believe!!". I really do hope that there will be an (although delayed) improvement for you and that you are feeling even a little better now. Is there any way I could talk to you more privately?
Hi Frances, Thank you so much for reaching out and watching my video. If you email me stemcellsfordeepa@hotmail.com, I could give you my number and we can chat then. Its so much better speaking with someone. xx
Hi, May I ask you for how long you've been having MS and do you have spinal lesions (which EDSS did you have)? I've already read 2 articles assessing HSCT in progressive MS. The conclusion I can draw: SPMSers with many lesions, especially spine lesions, are not good candidates given that HCST would rather worsen disability level in them. And thanks for the video. Your experience was very important piece of information - I also concider HSCT💜
Hi, I’ve had MS now for 23 years. I do have a few leisions on my spine. I’ve not had an actual relapse since 2014 but my disability has worsened. Having hsct didn’t actually help me in the sense that my disability worsened since 2018. I’m not saying it was the hsct that caused this but that maybe it was the progression that was due to happen anyway. My EDSS before was a 6.5 and now it would say I’m closer to a 7.5. Before I had hsct I was using crutches but then I got sepsis and also had the hsct and never got back to my baseline. I hope you find this useful. Please do ask if you have any more questions. I wish you all the best your journey.
Sorry to hear this Deepa! Hope u feel better soon 😢
You must be proud of your self Deepa because you made the decision to do this trial, so don’t regret it and be so hard on your self. I met people in the Facebook who found improvement after 5 and 8 years after the treatment, so don’t rush it. I hope all the best for you in the future ❤️🤞🏽
Thank you for your well wishes. Im so sorry, I must have missed this comment.
I really hope I have some improvements. Currently I’m not doing too great but I’ll still keep fighting and working to keep whatever is working. 😊
I've had M.S for 18yrs. Over the first 3yrs I had numerous relapses and was badly disabled and using a wheelchair. I was started on Mitoxantrone and Copaxone. This is a chemotherapy agent combined with a disease modifying therapy. I went 14yrs relapse free and through hard work recovered to the extent that I achieved more in that 14yrs than in 30yrs of good health. I would advise anyone with active M.S to take a chance on the most aggressive treatment available to stop relapses and the accumulation of disability.
Hi Ronny, thats amazing that copaxone and mitoxntrone worked for you.
I was on avonex for a couple of years and then tysabri for about 4 years. When tysabri was no longer helping I tried hsct.
I feel now, I should have waited for Ocrevus. Who knows what the results would have been.
What works for some, doesn't necessarily work for others. I had a friend very dear to me who was on copaxone for a while, kept relapsing so went to tysabri and then still relapsed.
We just hope and pray we all stay as healthy and mobile as we can.
God bless you
@@DeepaThakrar Thank you. In some ways we're lucky there are so many options now and so much productive research. During my years in remission I avoided all things M.S related so I'm heartened by all the progress. Hopefully now some progress will be made on central nervous system repair.🤞
@@DeepaThakrar Dear Deepa, if I may ask, are you on any DMT now (after you came off Tysabri)?
A dear friend of mine who's been on Tysabri for nearly a year now was told by her neurologist that she'd probably be switched over to Ocrevus after Tysabri.
My point is, if you are not on any DMT now, why did you decide to discontinue DMT?
Anyway, I realize that to be able to make any informed decision having MS is a puzzle - what works for some doesn't work for others. You go on DMT and you just wait and see what happens. Therefore, having people with MS sharing their experiences of living with the disease, effects of DMTs and other treatments on them on YT, like you do, is a real blessing.
All the best to you!
I'm in the same boat as you. I too had the transplant in 2019 (November). The spasticity is definitely my main issue coupled with weakness. Prior to the transplant, I was able to walk to and from the toilet with a walking frame at home. Now I can no longer move my legs and I'm on the wheelchair all day. I'm not sure if we will eventually improve as I have read that some people do get better after 2 years. Same as you, I probably wouldn't recommend anyone with a high level of disability to go. I wish us well and hope that a cure will be found in our lifetime. Love and hugs to you. ❤
Thank you so much for taking the time to leave a comment. I’m so sorry to hear that you too as well as many others are in the same boat with spasticity and stiffness. I can’t tell you how many people I’ve met along the way who have really struggled after having the transplant.
Again we can all live in hope that maybe with the strength we may one-day have a cure to fix all our issues.
I wish you well for the future and pray that you remain as well as you can be xx sending prayers your way 🙏🏼
I had HSCT at Clinica Ruiz in 2016 and I am very glad I did. I have Progressive MS. I knew going in that HSCT would not repair myelin. I did receive several good benefits from it. My slow working brain and brain fog was completely eliminated just days after getting my stem.cells back. I had increasing overwhelming fatigue as the MS progressed and that too was completely eliminated along with several other benefits. My mobility has decreased and other symptoms have increased due to the damage that was already done but I have no new symptoms. I am very glad I went to Puebla and had HSCT.
Your words have given me hope today, God bless you😊
Keep going,keep hoping,keep moving,never give up.Engage with others treated in Mexico..look forward,not behind.
I'm sorry to hear that
Hope you will see a result someday.may I pls ask why they refused you in UK?
I am waiting for an answer from the team doing hsct in uk atm and am quite nervous
Thanks
Hi Ana, the criteria for having it in the UK is you have to have tried I think 3 drugs, and then your MRI should show active lesions.
@Deepa Thakrar thank you for your reply Deepa x
All the best to you hope we will get through this standing up tall
@Deepa Thakrar sorry I forgot to ask,so your neurologist referred you and they refused isn't it?
If you are interested and need someone to chat to from time to time I would be happy to keep in touch xthanks again
@@ancadi4ever hi sorry for the late reply. I did ask my neurologist to be considered for hsct. An mri was done and I did not meet the criteria and so I decided to have it done in Mexico.
One thing to remember about hsct is that you have to work extremely hard with physio to get results. It’s not a miracle treatment where everything radically changes for the better.
Good luck in your journey.
If you email me deepadavdra@hotmail.co.uk I can send you my details to keep in touch x
@Deepa Thakrar hi Deepa ,thanks for your response x
I would love to keep in touch with you if that is OK, thanks for the details x
I'm so sorry! I feel like crying. I really hope that it's just taking longer to work for you than it should..l
Aww me too ... fingers crossed 🤞🏼
Hello, I've one enquiry.., ms treatment research is not properly going as other disease research are going what do u feel about it please reply ASAP!
Hi there,
I’m sorry I don’t quite understand your question. Please could you rephrase it?
Thank you
Thank you for this video I too had chemo in 2019 I also got worse for about 1 years after finishing however I feel I bottomed out certain symptoms have improved others have not but if you had not done this chemo You may have gone even worse to the point where you are in a hospital because this there is no end to the damage that MS causes so you I think the chemo whether it's maven clad or HSC T will is worth doing because you because if you don't do it you probably will continue to get worse
Thank for your comments Rob. You maybe right. Unfortunately MS is so unpredictable, who knows how our disease will progress. With or without medication.
Unfortunately I’m not doing so well, but I’ll keep in fighting,
I hope you are well and managing your symptoms. Best of luck to you and stay strong 💪🏽 x
Oh my goodness....
Hearing your view I wonder if this is worth it? both finacially and physically. Or perhaps if the treatment is best before serious damage occurs? Do you feel it's paused your symptoms from develpoping further, honestly was it sold a a cure all, the literature is overtly positive and I wonder if it's excessivly overly rosey in its outlook. Hope you're doing okay. I've only just started this 'journey' a phrase I've come to hate already.
Hi Mike, so nice to hear from you. Firstly I’m sorry you’ve had to start this journey.
When I comes to my symptoms I don’t feel it’s paused them but I don’t feel I have got any new symptoms either. I think from the symptoms I had before hsct they have just progressed over 3 years. My right arm and hand have become weaker and my walking has progressed to being in the wheelchair and barely managing 200 steps a day.
Pre hsct I was able to walk with 2 walking sticks, but then I got sepsis and o upgraded to a Walker. Ever after hsct o was managing the Walker but gradually it has become harder to move my legs.
I have heard many positive stories of successes but these are mostly for those who catch it early and have the treatment but when they get sick then alot of old symptoms come back temporarily.
I also have met many people/friends that feel far worse than they did.
I’m not here to agree or disagree with the treatment but to tell you my experience and how it has been for me.
I guess what you would need to do is ask people experiences in the ms hsct forums to find out their experiences- good or bad.
On the whole I’m positive, I work hard at my business and my health and can honestly say I’m happy. I know many people who are far worse than I am, and for this I’m grateful.
I wish you all the best in your journey. Please message me if you have any more questions 😊
Hi Deepa, your honesty is deeply appreciated ❤️. THANK YOU so much for your thoughts and experience with HSTC. I emailed you asking for a couple questions. I will also post them here in case you would rather answer on TH-cam so other people can watch your answers:
1) How much does it cost in the UK and other places such as Mexico or Thailand? I couldn't find any details on that
2) Up to day. Have you had any more relapses after the treatment with stem cells? Do you feel it helped you get better? Would you do it again if you had the chance to go back?
Best regards,
Jorge.
Hi Jorge,
Thank you for taking the time to watch my video.
I’m not actually sure how much it costs in the UK. You can also have it done in Russia. If you search hsct Russia.
Since having the treatment I personally do not feel it has helped me. I would actually say I’m worse than pre hsct. I’ve also come across many people that feel worse after having it done and only a handful of people that have had really good results. Stiffness is the main thing that people suffer with and being stiff makes you unable to do things. I now spend most of my time in the the wheelchair as walking is so hard.
I know that back then, before having treatment if anyone told me not to do it I probably would’ve dismissed what they were saying.
There are so many groups on Facebook that tell you about all the positive things that happen after HSCT, which gives us hope and makes us believe that this is the only answer. What you don’t normally see on these groups, is all the people that have had issues after it. Mobility being a major one!!
I’m not going to say that it doesn’t work, but for me and the people that I know of and who I’ve come across, well most of them it hasn’t helped them.
Would I do it again if I was given the chance? No I wouldn’t and unless you are in your early stages of a MS, I wouldn’t recommend it to others. Those who get it done early have a better chance.
My last relapse was actually in 2014, and I had my treatment in 2018. I’ve just had an MRI yesterday, so I should be able to answer that question once I get my results. But so far I don’t think I’ve had any relapses but really suffer quite a bit during coughs and colds.
I’ll be happy to answer any more questions that you may have, and I wish you all the best in your journey x .
@@DeepaThakrar You are just wonderful Deepa. I deeply appreciate your thorough answer.
I would love to know the results of your MRI. I will send you a message in a couple weeks😉 (if that is fine with you of course).
I didn't know one of the side effects was stiffness. I read you can have more susceptibility to infections and a weakened immune system. As well as more proclivity towards developing future cancer due to the chemotherapy part of HSTC. Am I correct? Are there any other side effects?
By the way, I don't know if you know Dr. Terry Wahls. She developed MS, tried all medicines and wouldn't improve. She started researching and changed her whole lifestyle (diet, exercise, elimination of toxines, etc.) She was able to come back from the wheelchair. Best of all is that her claims are backed up by scientific research. Her book is called "The Wahls Protocol". You may want to check it out 😃
I heard Dr. Walch did HSCT
Chemo works!! However the earlier the better!! If done early, most do get better. Timing is crucial!!but even if done later, it's worth it!!!!!
I appreciate you doing this video as I'm ready to apply but have great concerns if this would help me. So many hard decision to be made that it's almost a gamble. I had so much hope and having to come up with the money is stressful. I'm so glad that I came across your video. Do you feel that the 80% effectiveness is correct, the facilities post?
Hi Candace, I’m so sorry it took me a while to reply.
The question you are asking I’m afraid I don’t have the answer.
Personally I think the transplant could work well for you but only if you catch the symptoms early. I believe that if you already have walking issues then this may not be the treatment for you. I’m only going by all the people i have come across along the way, since having their transplant who have found they have increased spasticity and stiffness, which when you combine those together, makes it difficult to walk and move your muscles.
I’ll be honest, at least I thought I would stay the same in terms of my health, not become worse than I was before. Again it’s not just me, there are a lot of people out there with the same problem.
I think it’s better to have both sides of this treatment and it’s after effects than one sided like they are in many forums.
Just ask as many questions as you can.
Please do not hesitate to ask any more questions if you have any. And I wish you all the best of luck with your MS journey x
Thank you for posting this. My sister has been diagnosed for about 6 years, she has a lot of flare-ups, painful, some left side weakness, she's 44 yrs old, good health otherwise. Wondering if she'd be a good candidate.
Hi Heather,
Thank you so much for taking the time to watch my video on HSCT.
I am now over three years post transplant, I’m not feeling too great. I feel that if I advise you to take the treatment for your sister, wouldn’t be an honest answer.
I know of more people that haven’t felt great after the transplant to those who have had it done.
What I would advise is to ask the right questions and do your research in all the hsct groups. I feel when you’re researching for stem cell transplant, you get a lot of good feedback from those that it was very successful for. However I feel there are a lot of people that don’t say how they actually feel and those that have declined since having the treatment. This could be because some of the admin group members don’t allow certain posts to be shared.
I pray that your sister finds the right answers and help to lead a healthy life. If I was to advise anything in my long journey of a MS, I would say please ask her to keep an eye on her diet, do an allergy test at certain foods that you are allergic to can cause inflammation and most importantly to keep up any exercise that you she can.
Good luck and best wishes xx
hello beautiful hope all is well! I have a question are you still taking the Ampyra medication?
Hi hun, yes I’m afraid I still have to take it. Without it I’ve become very fatigued, I can’t even lift my legs, my hand gets weaker and my speech starts slurring 😬
Dear Deepa, You were on the right track with the HSCT, probably the rejuvenation was helping. My guess is you were feeling good at first, and progressively went back downhill. I think you where just missing a step! You see, if your Immune System(IS) attacks the Mylene, that's fine, stem cells will help in replacing that Mylene. However, the problem persists, your IS still goes for that Mylene. Thus, HSCT is treating a symptom and not a cause. A Prolong Fasting Session 5Days+, will allow you to turn over in Apoptosis many of those defective Immune cells. Upon the slow re-integration of the right foods, new Immune cells are generated from a cleaned out slate of DNA. Too boot, all cells of the body become more robust, including DendroCytes(DC). The steps are as follows, in the first 2-Days of fasting your glycogen depletes. Remember you're going from Insulin/Glucose as fuel to Ketones/Lipids. Your energy will drop, but it'll come back. Day 3: Autophagy and Apoptosis, the checking of cell integrity. Those unworthy... Apoptosis, programmed cell death, as their part are needed to continue cellular growth in these rough times. Day4: Un-spooling of DNA to repair broken parts and fix any methylation issues. Day5: To be sure you made it to the end. After 120hrs no food, start eating again, but small portions every 4hrs, and by small, I mean small for say 2 days... From there, Diet on LowCarb/HighFat(LC/HF) on an 18/6 Intermittent Fasting(IF) protocol for 3months. Repeat, another 5 days, and slowly re-feed(2nd 5Day fast is so much easier, but I bet your first one was a killer). This will fix Gut Health, Hormone unBalance, reduce Blood Pressure, etc. Good Luck to you. Take notes throughout the process if you try this, Google search Autophagy, get tools to monitor blood glucose, and go for it. I believe in you. My girlfriend has MS, she doesn't even want to quit smoking... Thanks for sharing your experience!
I’ll have to try this. Thank you for taking the time to leave a comment. I tried the Candida diet for 5 months back in 2016 but it didn’t make any difference to my health.
That's not how Ms works. Hsct can halt progression.
Btw I did a second year of chemo as the first round wore off about a a year later This 2d year I feel was very helpful
God bless you. All my prayers are with you. You will get better! ❤️
Thank you for your kind words and prayers x
May God continue blessing you my darling but how are you feeling now🧡🧡🧡🧡🧡🧡
Thank you my lovely. I’m struggling a lot. Not walking anymore because it became dangerous and very difficult. My stiffness has increased and I am very reliant on my husband to take care of me.
I will be releasing an update within a week or so to talk about my progress in more detail
@@DeepaThakrar that is so awesome that you have your husband next to you I'm sorry you are experiencing this please check with your insurance you can have a aid come out to you a few hours a week to help around the house I will be looking forward to your updates peace and blessings to you @Mswarrior🧡🧡🧡🧡🧡🧡🧡🧡
Thank you for making this; it’s hard admitting that something which you worked so hard for didn’t work out. It’s easy to get caught up in HSCT’s best case and forget that not everyone gets it.
If you think the initial improvement when you got back to the uk was the rituximab, have you considered trying to get onto something like Ocrevus? Very similar drug, and (at least sometimes) covered on the NHS
Hi and thank you so much for having the time to leave me a message.
Ocrevus was offered to me just before I left for Mexico. I could go on this if I wanted to which I may do in the future. It’s a little frustrating because they do say once you have hsct you don’t need any DMD’s, but I’m finding so many do go on Ocrevus after their stem cell transplant.
I’m going to see if the MS gym proves to be beneficial and if not I will ask about Ocrevus.
Thank you and keep well 😊
Hi, I'm spms and I'm on Ocrevus right now. I'm researching and reading about those whose had the hsct done. I currently have right side weakness can't use my right arm. But can walk using my Walker back and forth to restroom but not for long walks. I use my scooter for longer visits. Ocrevus for me and other have caused balance, ride side weakness, ect... because before I started Ocrevus I was able to stand and move around as I please. Ocrevus is definitely poison for me and others. Check it out on fb groups. I've been on Ocrevus for 4 years now I'm finding that this drug is causing all the side effects happening to me right now. I just had my infusion in med January 2022 and now I'm having trouble walking! I'm researching HSCT procedure with hope of it working for me. Thanks for your input. Idk... thank I'll try PT instead! Thank you so much for your honesty it helped me decide as that's a lot of money to just hope it works! Praying for your recovery and it working better for you! 🙏🏽❤
Where in Mexico did you have you’re treatment?
Hi so sorry for the late reply. I had it done in Puebla with clinica Ruiz
So sad to here this
That’s ok, I would have never of known if I hadn’t had it done. At least now I can share my opinion of the treatment to others.
@@DeepaThakrar well done stay strong may god heal u
Thanks so much for this. I am newly diagnosed and terrified. I am having small symptoms at the moment nothing major but worried about progression so I don't have the money but wondering if I should really just get it done. So this is helped a lot that you are so honest!
I’m so sorry to hear you are recently diagnosed. Having this treatment is such a difficult decision to make. On one hand it may make keep you from deteriorating and getting relapses, but on the other hand it might make you feel worse. In all fairness, I’ve only met a handful of people who have had it done early on in their MS diagnosis. I think you would need to do some research and try and join groups who have had HSCT earlier on and see how they found it, and whether it helped them and also ask about those people who it didn’t help. Careful though, some of these groups are a bit biased but if you ask the right question you may get done honest answers.
I hope you continue to stay well and healthy and good luck in your journey 💪🏽x
Personally I think stress, a busy lifestyle and eating habits play an important role. Again this is just my opinion for me.
@@DeepaThakrar you’re amazing! Thank you so much for everything you’re doing seriously. You are making a difference to my life and I feel like I am not alone so thank you xxx
There is now Mavenclad, fda approved chemo. Same effect as Hsct but covered by insurance!!! Ask yr neuro!!!
I had first treatment in April 2022 and 4 months later I feel much better. I walk 10 miles per day at times
Wow that’s amazing. So happy to hear it worked really well for you. May I ask what your symptoms were before your hsct? Were you walking g with any aids?
@@DeepaThakrar getting better but trying to maintain my routine is at time challenging and I am blessed knowing that only myself can make these things truly SUCCESS THROUGH COMPLIANCE WITH THE PRACTITIONER....lol you know what I mean...hehehe
@@willjavidjohnsonosanlu7589 I know this is the hardest thing. In the beginning I was very good with the physio, but as time has gone on it has become harder. I wish I pushed myself more than I had. Even sometimes though, it’s still not enough, no matter how hard you try.
I’m still doing whatever I can do, just to keep whatever I can still moving.
Best of luck to you snd keep moving 😊🙏🏼
Hey , it would be interesting to see your walking , & your general mobility levels (if your'e up to it of course), this might also be really useful to you as a video diary (something to record how you are now , and you can look back on this in the future).
Ive had RRMS since 2004 , diagnosed with highly active MS in 2007 , my walking isnt good either , i understand what you mean about stiffness , oh my god this is my main issue as well, along with alot of numbess in my feet, to the point where i cant feel the ground im walking on (Great hey!).
your video is very useful in reminding us that stem cell treatment isnt always the "miracle must have thing", that we need to have to control MS.
........anyway fingers crossed you see some improvement , never say never , keep on pushing forward . Grace (Warwickshire , UK )
Hi Sapphire, apologies it my really late reply. I am going to do another video soon, one in which I will show my walking and mobility. I think it’s important for people to see that it’s not all rosy after stem cell treatment. I was so hopeful that this was going to change my life for the better but it just wasn’t meant to be.
I’m still hopeful, and you can never say never. I may just one day by some miracle feel better than I do and improve.
I continue to be positive and work hard on my physio. My husband and I started a new business venture so this keeps my mind occupied and busy.
So many people have a false sense of this treatment being the best. Unfortunately there are Facebook groups that when you are enquiring about hsct, you see all the positive comments and not enough of the cons. I feel these groups don’t let you see what and how many people feel after the treatment. This I feel is very unfair as you should be able to make your own mind based on real facts and evidence.
All we can do is try and hope for the best. I hope your MS is treating you well xx
@@DeepaThakrar Hello Deepa , thank you so much for your reply and for your kind words. I think its brilliant how you are highlighting your experience so that others can realise that stem cell treatment doesnt always guarantee success.
Yes, fingers crossed you do improve , stay positive , and keep up with your lifestyle doing physio etc.
I look forward to seeing your next video , until then stay well x
Hello Deepa , just thought I would send a message to see how you’re getting on. Hopefully you’re feeling better and stronger health wise. Happy new year .
@@sapphiresky7946 Hiya hun, Happy new Year!! OMG I know I still need to do an update… I’m so sorry. I’ve just been so busy with work that it’s been so difficult.
I’ve also had on and off colds, and to be honest I don’t think I’ve been doing too well at all. My walking isn’t great at all and I will definitely add this to my video as soon as I’ve done it. I’m relying on my husband to get me around the house and to help me, I find myself getting stuck in places where I can’t move my legs and I now have a carer three times per week just to give my husband a little bit of rest.
I’ll speak about more of my issues on my video which I promise I will do soon.
I hope you are keeping well
Take care hun xx
@@DeepaThakrar Hello Deepa , thanks for your reply, im sorry to hear that things havent improved much, if its any consilation im also stuck in limbo with my ms , like you my mobility is my biggest problem, i walk with a crutch and somedays even that is becoming increasingly difficult. Climbing stairs is a joke as my legs are just so weak these days! I will look forward too seeing your updated video when you get time. Im pleased that you have a carer , im sure the help they give you is so helpful.
wishing you every success in your health , lets hope 2022 is good for us . all the best , Grace x
Hi, Deepa! Thank you so much for making this video. It is so easy to get caught up in the...Hope (I guess?)...when looking into aHSCT and I wanted to hear the complete truth of someone who had it. I am considering it but need to hear and weigh up everything before taking that huge leap (financially etc.) and don't want to get stuck in an echo chamber of "just believe!!". I really do hope that there will be an (although delayed) improvement for you and that you are feeling even a little better now. Is there any way I could talk to you more privately?
Hi Frances,
Thank you so much for reaching out and watching my video.
If you email me stemcellsfordeepa@hotmail.com, I could give you my number and we can chat then.
Its so much better speaking with someone. xx
Hi, May I ask you for how long you've been having MS and do you have spinal lesions (which EDSS did you have)? I've already read 2 articles assessing HSCT in progressive MS. The conclusion I can draw: SPMSers with many lesions, especially spine lesions, are not good candidates given that HCST would rather worsen disability level in them. And thanks for the video. Your experience was very important piece of information - I also concider HSCT💜
Hi, I’ve had MS now for 23 years. I do have a few leisions on my spine. I’ve not had an actual relapse since 2014 but my disability has worsened. Having hsct didn’t actually help me in the sense that my disability worsened since 2018. I’m not saying it was the hsct that caused this but that maybe it was the progression that was due to happen anyway.
My EDSS before was a 6.5 and now it would say I’m closer to a 7.5. Before I had hsct I was using crutches but then I got sepsis and also had the hsct and never got back to my baseline.
I hope you find this useful. Please do ask if you have any more questions.
I wish you all the best your journey.