You are amazing! I hope things get better even sooner than expected. Your hair is too cute! Please keep your positive attitude. It's really helping me right now.
Shanya Edwards Hiya, thank you so much. I’ve got another update to do this week which I should do. Things are getting better for me slowly which I’m so pleased. I’m always optimistic that I will overcome this 😊 thanks for your support
Deena. Thank you for sharing. I think you are a remarkable woman. Coping with so much and with such a positive attitude. I look forward to you first year update and hope that the treatment works for you. Best regards. George
Thank you for posting your update. It really helps to see honest reflection on how you’re getting on and feeling post treatment. Please can you tell me what the medication is you talked about reducing because of cost - was it initially prescribed in Mexico and what for? Hope your stiffness is easing and you’re beginning to feel better. Jo x
Joanne Kobarenko hi Hun, the medication is called Fampyra in the UK and Ampyra in America. If I didn’t have to pay for it I wouldn’t have an issue taking it. My issue is that it’s costly and only helps me a little bit, but without it I’m a lot worse! 😡 it really frustrates me that I have to rely on it. I do honestly believe that one day I can come off it.
Following your progress with great interest and sending the bestest wishes for success from one MS fighter to another We are all Warriors Despite Circumstances 😊 Finding ways to fund my own HSCT treatment 💪✌️🙏
Lee Barber thank you for your well wishes. I have another update which I have almost got ready. Hopefully I will post it early next week. Fundraising is hard and distracting but explore every avenue. Newspapers, radio shows, bake sales and garage sales. I also had a lot of friends who did their own fundraising for me. Maybe you could ask your Facebook friends if they would be willing to help you by organising an event or doing a sponsored event and help raise money for your treatment. Maybe someone can do a sponsored walk, swimming, bike ride, etc. It’s tough going if you try and do everything yourself. Good luck in getting your treatment and add me on Facebook if you want to ask me anything or need advice with your funding. Actually do add me I have something of interest about Grants
Thanks for the advice Deepa, I may do that as well as Crowdfunding and other avenues, I started to pursue press interest as at the time this was a big step for me and almost a “coming out” party if you like amongst peers therevivemag.co.uk/business/find-out-how-a-video-games-designer-with-ms-is-winning-in-the-property-business/ but really it’s baby steps 🙏
Hi Tanya, thank you for your question. Before my treatment and before I got sepsis I was able to get about with walking sticks and also by holding onto furniture whilst in the house. After I got sepsis I started feeling less confident and weak in my arms and having the sticks was proving to be dangerous. I think had I not got sepsis, then I would probably still have the two walking sticks but as I stopped using them I became very reliant on my walker and also my wheelchair. My walking has decreased and I struggle a lot more after my stem cell transplant. This is mainly due to stiffness. I think the best advice I could give you is to remember that you have HSCT to stop the progression of your MS, but also to remember that any symptoms that go away or improve are an added benefit. Unfortunately for me that was not the case. I know many people who have had more symptoms after the transplant with lots of issues after hsct and some people that have done really well with HSCT. I believe those that do not have many MS symptoms and are in the early stages of being diagnosed or have fewer symptoms, will benefit more from hsct. Honestly, though, I really do believe the benefit is not from hsct but the physio you do instead especially when it comes to physical symptoms. Again everyone is different and this is only opinion. I only know that since having my treatment I do more physio then I used to do and that’s what keeps me mobile. However, when I leave Physio for a few days and needs me in a lot worse position and I become very stiff again. I hope this has not been too long winded and gives you a little bit of an insight into HSCT Are used to be very optimistic about HSCT, but having not changed any of my symptoms I’m actually not sure anymore
Apologies for for the delay in replying. I have secondary progressive although I have been officially diagnosed as that. I used to be relapsing remitting. I’m curious to know how MS effects you? I am my h stiffer these days as this is often a side effect of the hsct which I’ve found with many other people too that have hsct. The thing to remember which is most important is that it’s supposed to stop progression and if you are to find some real benefits and that will come from physio snd staying as mobile as you can.
Hi. I came across your videos. I live in the U.S and I am thinking about going to Mexico for the stem cell transplant. How are you feeling now? How is the stiffness?
Tanya-Marie P Hi Hun, I still do have stiffness and I believe that will take time to go away or become less. Also it’s a lot to do with keeping moving which at times I don’t always do. There is a hsct mexico group on Facebook where you can get feedback from people who have had the treatment already and also get a larger response from others. You can then form your own opinion on whether it’s right for you. The page allows you to ask as many questions that you may have. For me personally, I didn’t want my MS getting any worse as I was already using the wheelchair often. I don’t know if it has worked on me yet, but other than the sickness I don’t feel any worse, and my last MRI does not show any new lesions. If it has halted the progression of my MS then I am a happy bunny. I hope this was helpful to you
Hi, best wishes for your speedy recovery.... can you please give me a little Insight on the effectiveness of hsct for secondary progressive multiple sclerosis ...
Aditya Kumar Sahni Hi there, thank you for taking the time to comment. As much as I would like to comment I find this difficult as each individual is different. Also it doesn’t work for 20% of people. The main thing to consider is that HSCT stops progression of MS. There are many groups on Facebook if you search HSCT, a list of groups can be joined and you can get more opinions and real life experiences from people that have had it done some of which are secondary progressive. I’m not sure if I am primary or secondary progressive as my Neuro still hasn’t changed my category of relapsing remitting and have never been told anything else. I hope this helps and I hope you find the answer. Definitely worth joint the Facebook groups and do some more research. Good luck x
@@DeepaThakrar thanks Deepa for the response....i am really apprehensive, with no ms specialist here in India, I have to choose between Rituximab and HSCT for my SPMS. I am looking for some ms specialist who could provide an online consultation....and what did you mean by it doesn't work for 80‰people....hsct for spms? And all the very best for your speedy recovery....god bless
Hi again, I think if you add the Facebook group hsct Mexico you maybe able to speak to someone in Mexico that can advise you of the treatment. Please forgive me I made a typo error. What I meant to say hsct works for 80% of people the the rest are non responders.
@@DeepaThakrar thank you for your response....I'll join the fb group to gain some more insight into it....because it is very important for a doctor to figure out if you are a candidate for the transplant, unless putting your body through such aggressive chemotherapy can do more harm than good... Can you please suggest a doctor (MS specialist) who could provide an online consultation? I am really looking forward to getting one. Thanks in advance.
You are amazing! I hope things get better even sooner than expected. Your hair is too cute! Please keep your positive attitude. It's really helping me right now.
Shanya Edwards Hiya, thank you so much. I’ve got another update to do this week which I should do. Things are getting better for me slowly which I’m so pleased. I’m always optimistic that I will overcome this 😊 thanks for your support
Deena. Thank you for sharing. I think you are a remarkable woman. Coping with so much and with such a positive attitude. I look forward to you first year update and hope that the treatment works for you. Best regards. George
Hi George, thank you so much for your lovely comments. I’m sure it won’t be long before I see some improvements 😊
Thank you for posting your update. It really helps to see honest reflection on how you’re getting on and feeling post treatment.
Please can you tell me what the medication is you talked about reducing because of cost - was it initially prescribed in Mexico and what for? Hope your stiffness is easing and you’re beginning to feel better.
Jo x
Joanne Kobarenko hi Hun, the medication is called Fampyra in the UK and Ampyra in America. If I didn’t have to pay for it I wouldn’t have an issue taking it. My issue is that it’s costly and only helps me a little bit, but without it I’m a lot worse! 😡 it really frustrates me that I have to rely on it. I do honestly believe that one day I can come off it.
Following your progress with great interest and sending the bestest wishes for success from one MS fighter to another
We are all Warriors Despite Circumstances 😊
Finding ways to fund my own HSCT treatment 💪✌️🙏
Lee Barber thank you for your well wishes. I have another update which I have almost got ready. Hopefully I will post it early next week.
Fundraising is hard and distracting but explore every avenue. Newspapers, radio shows, bake sales and garage sales. I also had a lot of friends who did their own fundraising for me. Maybe you could ask your Facebook friends if they would be willing to help you by organising an event or doing a sponsored event and help raise money for your treatment. Maybe someone can do a sponsored walk, swimming, bike ride, etc.
It’s tough going if you try and do everything yourself.
Good luck in getting your treatment and add me on Facebook if you want to ask me anything or need advice with your funding.
Actually do add me I have something of interest about
Grants
Thanks for the advice Deepa, I may do that as well as Crowdfunding and other avenues, I started to pursue press interest as at the time this was a big step for me and almost a “coming out” party if you like amongst peers therevivemag.co.uk/business/find-out-how-a-video-games-designer-with-ms-is-winning-in-the-property-business/ but really it’s baby steps 🙏
Thanks alott ur video is a great help and hope
Hello your video is amazing, can I ask how were your symptoms before the hsct ?? X
Hi Tanya, thank you for your question. Before my treatment and before I got sepsis I was able to get about with walking sticks and also by holding onto furniture whilst in the house. After I got sepsis I started feeling less confident and weak in my arms and having the sticks was proving to be dangerous.
I think had I not got sepsis, then I would probably still have the two walking sticks but as I stopped using them I became very reliant on my walker and also my wheelchair. My walking has decreased and I struggle a lot more after my stem cell transplant. This is mainly due to stiffness.
I think the best advice I could give you is to remember that you have HSCT to stop the progression of your MS, but also to remember that any symptoms that go away or improve are an added benefit. Unfortunately for me that was not the case. I know many people who have had more symptoms after the transplant with lots of issues after hsct and some people that have done really well with HSCT.
I believe those that do not have many MS symptoms and are in the early stages of being diagnosed or have fewer symptoms, will benefit more from hsct.
Honestly, though, I really do believe the benefit is not from hsct but the physio you do instead especially when it comes to physical symptoms. Again everyone is different and this is only opinion. I only know that since having my treatment I do more physio then I used to do and that’s what keeps me mobile. However, when I leave Physio for a few days and needs me in a lot worse position and I become very stiff again.
I hope this has not been too long winded and gives you a little bit of an insight into HSCT
Are used to be very optimistic about HSCT, but having not changed any of my symptoms I’m actually not sure anymore
Hi dear, I hope you feel better now !
I am watching your video while thinking to have HSCT. Am curious what type of MS do you have ?
Apologies for for the delay in replying. I have secondary progressive although I have been officially diagnosed as that. I used to be relapsing remitting. I’m curious to know how MS effects you? I am my h stiffer these days as this is often a side effect of the hsct which I’ve found with many other people too that have hsct. The thing to remember which is most important is that it’s supposed to stop progression and if you are to find some real benefits and that will come from physio snd staying as mobile as you can.
Hi. I came across your videos. I live in the U.S and I am thinking about going to Mexico for the stem cell transplant. How are you feeling now? How is the stiffness?
Tanya-Marie P Hi Hun, I still do have stiffness and I believe that will take time to go away or become less. Also it’s a lot to do with keeping moving which at times I don’t always do.
There is a hsct mexico group on Facebook where you can get feedback from people who have had the treatment already and also get a larger response from others. You can then form your own opinion on whether it’s right for you. The page allows you to ask as many questions that you may have.
For me personally, I didn’t want my MS getting any worse as I was already using the wheelchair often.
I don’t know if it has worked on me yet, but other than the sickness I don’t feel any worse, and my last MRI does not show any new lesions.
If it has halted the progression of my MS then I am a happy bunny.
I hope this was helpful to you
@@DeepaThakrar thank you so much. I will check out the Facebook group. Good luck . I hope your stiffness leaves you soon
I love your short hair it really suites you
Thank you so much hun x
Hi, best wishes for your speedy recovery.... can you please give me a little Insight on the effectiveness of hsct for secondary progressive multiple sclerosis ...
Aditya Kumar Sahni Hi there, thank you for taking the time to comment. As much as I would like to comment I find this difficult as each individual is different. Also it doesn’t work for 20% of people.
The main thing to consider is that HSCT stops progression of MS.
There are many groups on Facebook if you search HSCT, a list of groups can be joined and you can get more opinions and real life experiences from people that have had it done some of which are secondary progressive. I’m not sure if I am primary or secondary progressive as my Neuro still hasn’t changed my category of relapsing remitting and have never been told anything else.
I hope this helps and I hope you find the answer. Definitely worth joint the Facebook groups and do some more research.
Good luck x
@@DeepaThakrar thanks Deepa for the response....i am really apprehensive, with no ms specialist here in India, I have to choose between Rituximab and HSCT for my SPMS. I am looking for some ms specialist who could provide an online consultation....and what did you mean by it doesn't work for 80‰people....hsct for spms?
And all the very best for your speedy recovery....god bless
Hi again, I think if you add the Facebook group hsct Mexico you maybe able to speak to someone in Mexico that can advise you of the treatment.
Please forgive me I made a typo error. What I meant to say hsct works for 80% of people the the rest are non responders.
@@DeepaThakrar thank you for your response....I'll join the fb group to gain some more insight into it....because it is very important for a doctor to figure out if you are a candidate for the transplant, unless putting your body through such aggressive chemotherapy can do more harm than good...
Can you please suggest a doctor (MS specialist) who could provide an online consultation? I am really looking forward to getting one.
Thanks in advance.