Last reply 6 months ago
I want Stem Cell treatment..

Hey everyone
I really want to have the stem cell treatment, my neuro has said if I relapse again on tysabri then I’d be put forward, anyone know how I can get put forward for a trial without having to have another relapse?
Thx in advance

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aabreu
6 months ago

@stumbler posted a really good video recently. Check out his posts. The doctor e
Explains who is eligible.. in U.K. I’m guessing from the accent.


chelseagirl
6 months ago

@aabreu that’s my neurologist in the video, dr Silber, he said to me it was very risky, I feel like I need to take the risk now, I’m getting worse I am scared of what the future holds for me, I really want to have the treatment, I have my infusion and an MRI on Monday, I’ve just had an MRI which showed an active lesion. I’m hoping in a weird way it shows more lesions so I’d qualify, keeping everything crossed


aabreu
6 months ago

Wow. That’s weird. I was pretty impressed by him.
There is Lemtrada. If you want to have a family, HSCT may not be interesting to you.


stumbler
6 months ago

@chelseagirl , here’s a link to the post with that video, as mentioned above:-

https://shift.ms/forums/topic/stem-cell-treatment-where-are-we


chelseagirl
6 months ago

@aabreu and @stumbler I saw the link, I’ve been diagnosed since 2011, I want to have a family but MS has caused me so many problems I now don’t leave the house, apart from for infusions and hosp appointments, I’m 33 this year and single so my chances of having children are slim. I want to have a tolerable life, I’m in so much pain it’s gettiing me so depressed that I’m not fitting in to the norm of society or what I pictured my life to be 🙁


aabreu
6 months ago

Hi @chelseagirl

You have been diagnosed for much longer than me. I probably shouldn’t be giving advice. But everyone here does understand what your going through to some extent.

My only thought is I hope you can keep your options open. And you are lucky in U.K. If you can get a doctors appointment that sticks it seems. There is both mavenclad and Lemtrada available. I hear very good things about these treatments. UK also has stem cell treatment. Not so in USA.
Your only difficulty is choosing one of these effective treatments. If you are set on stem cell treatment, I’ve heard people freezing their eggs.

I’m actually going for the HSCT option. But my life situation is much different from yours.
I think others will chime in. Hopefully from the female perspective. I’m just and old jaded man.


stumbler
6 months ago

@chelseagirl , you don’t need me to tell you that your MS has managed to isolate you. You’re right about your family possibilities as you do need to be “out there” in order to meet a partner.

Although, I do understand that MS can complicate the logistics of going beyond the front door. Especially if pain and depression are also part of the MS mix.

In this day and age, no-one should be living in pain. Pain is a common subject for MSers. There are more details on this subject here :-

https://www.mstrust.org.uk/a-z/pain

So, are you able to specify the type of pain that you endure? And what treatments your MS Nurse, GP and Neurologist have provided?

Are you taking anything for depression? This is also a major bugbear for MSers, and anyone who is struggling with a lifelong medical condition. Anti-depressants aren’t a sign of weakness and can be a necessity to manage the burden we carry.

As with everything in life, our MS needs to be managed, so that we can try to lead a normal life. A multi-disciplinary medical team should be available to us to deal with all aspects of our condition.

So, if you could effectively manage your pain and depression, would this enable you to participate in life and achieve your aspirations?


chelseagirl
6 months ago

Hey @stumbler
It would help me I feel if I wasn’t in so much pain. My headaches are so bad it’s not like I’m living a decent life. I would do anything for 1 good day, let alone a good life, I’ve realised that that won’t happen for me. I just want to feel better for a day. I don’t get any good days anymore, I used to have good days but they have been long gone. Pain has taken over my life 😣 I take citalopram for depression, although while im in so much pain I can’t see this helping me, I’m giving up and I never thought I would. Fed up of my bed and pain. Things have got so much worse in the last year for me. Not handling pain well. I take codeine and paracetamol when desperate, try to not take pain killlers. I’ve stopped smoking to help myself, I don’t drink alcohol at all anymore. I’m boring now. I can’t drive anymore my life is in the gutter 😥 hate MS


stumbler
6 months ago

@chelseagirl , anything is possible, given the right medical support.

Getting your headaches and other pain under control seems to be the number one priority. The sources of the pain need to be understood before the correct treatment can be given. Over-the-counter (OTC) analgesia may not be the right treatment.

Identify and address the cause is the way forward. So, find out whether there is a specialist Pain Clinic for your area.

I’ve given up smoking and drinking too. I’m almost a saint now, with my absence of vices! But, I won’t give up on life. I, like you, are too important.


chelseagirl
6 months ago

I’ll try find out about the pain clinic if we have one. Thanks @stumbler


aabreu
6 months ago

@chelseagirl
I’m sorry you’re in so much pain. My wife has fibromyalgia, she is in constant 24/7 pain. It wakes her up and we rarely share the same sleep schedule as a result…. Leaving me plenty of time to mess around on the internet. We’ve been married for 12 years and it has become normal. It is easy to let things become normal. And I am beginning to feel very guilty sitting here writing this. Anyway, she is constantly trying to give me some of her Percocet pills for my headaches. I’ve never taken her up on it. I complain though. She pretty much ignores me now as I have been ignoring her.
When my headaches get in the way, I do pop some pills. But you seem to be way beyond popping a few over the counter pain pills.
I’m not in UK, but there are pain clinics. I googled it. I’m google searching one for my wife right now. She should have done this last week since our new insurance wrote us letter saying they won’t cover one of her pain meds. I’m going to find a hospital and force her to go.

I googled pain clinic near you.

https://www.nhs.uk/Services/hospitals/Services/Service/DefaultView.aspx?id=277874

https://www.bing.com/maps?osid=ea95783d-633f-4f52-9bb5-4f25fe5fa6e6&cp=51.443008~0.131718&lvl=12&v=2&sV=2&form=S00027

I know, this disease that we have is not fair. It’s not your fault. There is nothing we did in life to cause this. We didn’t deserve this. But we can’t play the victim and let it take or life. We have to fight back. Be persistent. Screw that stiff upper lip nonsense. Go down fighting. So what if it ain’t pretty. I like to say, it’s about time someone gets spitting mad about something.

BTW: I’m jealous in many ways what is available in UK. It makes me mad and I’m not ashamed to say it. Do you know anyone that went bankrupt over medical bills in UK? I do in USA. Is HSCT is a possibility in UK? It isn’t in USA unless it’s part of a trial. I wouldn’t have known I qualified if I didn’t ask the question. You’re fortunate to have a good doctor. He knows all about HSCT. I saw the video. Not one doctor in the USA bothers to read their own medical journals. They are CLUELESS about HSCT in USA.
Just don’t give up. You have options and there are people here that care.


aabreu
6 months ago

Copied pasting this HSCT information for you.

Worldwide HSCT FB Group Links
.
By Barb Yoder Coppins on Tuesday, October 14, 2014 at 12:04pm

There are many worldwide HSCT Facebook Groups. If you would like information about other HSCT facilities, please join any of the following HSCT Facebook groups. Please make sure you read each group’s Code of Conduct/Group Guidelines before posting in the group. Please note that the admins of each group are very busy and cannot possibly respond to every private message & friend request they receive from members. Therefore, it is preferable to post any questions you have in the group that pertains to your specific question. Thank you!

Worldwide Main HSCT Forum: Hematopoietic Stem Cell Transplant – MS & Autoimmune Diseases: https://www.facebook.com/groups/149103351840242 or go to http://www.HSCTAwareness.com. This is a group about all legitimate HSCT facilities worldwide. George Goss is an admin & is an avid researcher and is the most knowledgeable & informed person in the group.

Chicago HSCT: https://www.facebook.com/groups/burthsct/

HSCT Fundraising: For those pursuing HSCT needing to fundraise to pay for the costs. There are fundraising tips, fundraising suggestions, and examples of fundraising ideas and sites. Unlike most HSCT FB Group, you CAN post your own personal HSCT Fundraising link. Posts are restricted to once every 24 hours please to enable everyone’s posts to be seen. https://www.facebook.com/groups/hsctfundraising/

Scleroderma Hope House – Chicago: Housing for ALL autoimmune diseases who are pursuing HSCT with Dr. Burt in Chicago. https://www.facebook.com/Scleroderma-Hope-House-503324963043358

Chicago HSCT Control Arm – RRMS – Only HSCTers who have already been randomized to the Control Arm of the Chicago Clinical Trial for RRMS. Control Arm-ers past & present welcome! https://www.facebook.com/groups/chicagocontrol/

HSCT Caregivers Worldwide – Only HSCT Caregivers can join, not HSCTers. Past , present and future HSCT caregivers are welcome! http://www.facebook.com/groups/hsctcaregiversworldwide

HSCT for PPMS: https://www.facebook.com/groups/hsctppms/

Mexico HSCT: https://www.facebook.com/groups/mexicohsct/

Philippines HSCT: https://www.facebook.com/groups/philippineshsct/

Russia HSCT: https://www.facebook.com/groups/404629779644453/

Israel HSCT: https://www.facebook.com/groups/IsraelHSCTMSAUTOForum/

Dr. Burt Scleroderma Stem Cell Pioneers: https://www.facebook.com/groups/StemCellPioneers/

Bill & Cyndy Martin & Holly Hauser are the admins of this group. This group covers ALL scleroderma patients, no matter what location they seek HSCT, but the majority of them have gone to Chicago.

UK HSCT: https://www.facebook.com/groups/ukhsct/

HSCT Norge for MS, CIDP og andre autoimmune sykdommer: https://www.facebook.com/groups/norgehsct/ (Group language is Norwegian, not English).

Life after HSCT (Veterans Support Chat): Only post-HSCTers can join! https://www.facebook.com/groups/894046303941177/

India HSCT: https://www.facebook.com/groups/113034538879355/

Italy HSCT: https://www.facebook.com/groups/778323835531509/

Singapore HSCT Raffles: https://www.facebook.com/groups/1587787611475710/

Is there a group for the other Singapore HSCT facility?

Multiple Sclerosis and HSCT Australia: https://www.facebook.com/groups/787070671345994/

Stem Cell Warriors: https://www.facebook.com/groups/316388125075284 This FB Group was created after several Dr. Burt HSCT for MS patients became friends and decided we needed a forum to share our questions, concerns, thoughts and share the good news of HSCT to others who haven’t heard. Other FB Groups have sprouted out from this group…which was the idea of Tiffany Lilly (Rae) and friends. Beware of the stem cell scammers in this group. Unfortunately, they’ve been allowed to join & spread…

Michigan HSCT: Only for people who currently LIVE in Michigan and are pursuing HSCT or have already had HSCT. Group purpose is to get to know our #HSCTNeighbors better and attend each others fundraising events or other “in-person” meetups. http://www.facebook.com/groups/michiganhsct

If you have created or joined a similar “state based HSCT group with the same purpose as the Michigan HSCT group, please post a link below and it will be added.


aabreu
6 months ago

And one more for you. Maybe it will bring you a little bit of hope.

Tessa talking on BBC Radio Gloucestershire 19th March 2018

For those who missed Tessa talking to Anna King on Radio Gloucestershire, or who could not access the interview on the BBC iPlayer.

Posted by Help get Tessa Walking again. on Friday, March 23, 2018


monica2015
6 months ago

@chelseagirl, sorry to hear of your predicament.

I received a transplant a year ago at Hammersmith hospital. I was do with extremely rapidly evolving RR MS, having had 76 relapses now over 13 years. I had progressed to SPMS.

I had failed one course of Lem so in a dissimilar situation to yourself. However, if you have two T2 lesions, you can also qualify.

Moreover, in your position, whilst controversial, if you have an active lesion, I would simply fake a relapse. Who is your Neuro to challenge you on this, given that it can often resolve itself in 6-8 weeks, in which time it is highly unlikely you will have seen Dr Silber, judging from my own experience with another neuro?

HSCT is usually significantly easier to obtain in the UK if you have inflammation evidenced on an MRI scan.

However, if you do not wish to delay, at a hefty cost, you could travel abroad to one of the more reputable centres. There is a risk of course, and I am aware of fatalities both here (1) and abroad, but you should be well informed as possible to make this decision for yourself.

Hope this assists. Good luck!

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