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jacquib
3 months ago

30 year old veteran here – 21-51 (and still kicking). Do you know much about stem cell treatments, and of anybody that has had some success out of them? Getting sick of drugs that sort MS and break other thing. Came of Betaferona a year or so ago, and have been on Gilenya for past year but just got taken off that because it pretty much depleted all my white blood cells. Looking at other option … been taking hemp capsules for the past couple of weeks as a bit of a boost while my blood comes back to normal, and actually feel pretty good since taking them, pain gone, sleeping better – but I am curious about stem cell treatment. Going to see my neurologist in Feb to discuss alternative drug options, but …


nutshell88
3 months ago

Hi
My english is not great but i hope u didnt mean ms hit you now after 20 years because im considered inbthe middle of my 20 yrs journey
Got ms age 17 now im 30 been on interferon in 2010 only never had any other treatment and i get no relapses but atrophy in my brain now but it didnt cause any symptom.
I didnt even feel it.

@jacquib i agree with u i have a messed up main organ which is my brain why should i mess up immune system liver heart or any other main organ with these treatments thats one of the reasons ive never taken one for long perion of time.


nutshell88
3 months ago

And for the advice my usual advices regarding to that better not smoke or drink spirits if u reduced your fizzy drink intake it would be better never take energy drinks enjoy your life and look at bright side of life family friends traveling shopping is a great distraction
Try to think of me as u fell of stairs and long ago and u forgot about it.

there is no need to think or worry about ms.

worrying depression anxiety all locates in the brain but ms is a dictator it doesnt like anything to share the brain with him so it would provably cause a relapse if u over worry

Be safe


stumbler
3 months ago

Hi @jacquib and welcome.

Stem Cell Treatment is still in its infancy. It involved “harvesting” some of your stem cells, using chemo drugs to deplete your immune system, then reintroducing the harvested stem cells to assist in the regeneration of your immune system.

It is a very aggressive treatment.

A few factors will influence whether you will be considered for this treatment, your age and your MS type being two of them.

A successful treatment is one where the MS is halted and your body is able to recover some of the lost function. This latter aspect depends on the amount of “neuronal reserve” you have available. This reserve can be depleted, having been used in recovering from previous relapses.

Hello, yes I concur be very wary of stem cell cures until they are way more developed,
Im registered blind so I find shift.ms quite hard to navigate. Anyhow to @nutshell88 yes everyone has a different case, do the incredibly expensive medicines work? Never for me either. Its all a roll of the dice, some things work for some people, basically trying to hard reset reboot the immune system. As the cause of MS is a mystery so is the cure. Sensible eating/drinking & lifestyle choices are of course a good idea. Not taking medication is not necessarily a bad thing. You learn your own body.


ahelps
3 months ago

Hi,

I understand the stem cell treatment is relatively new in uk but has been performed in Mexico and Russia for many years and they have treated thousands of Patients.

If you are in uk to have it on nhs then you need to be under 15 Years diagnosis, able to walk and have tried lemtrada or tysabri – if you’re 2nd progressive they might consider you if you haven’t tried either of those treatments.

Most people who don’t fall into those categories go to Mexico or Russia who will do everything over a month, they also use slightly different medicines then uk. (Uk uses atg and they use Rituximab with follow up injections).

If you really are interested then there are Facebook groups that are great for advice – I’m a member of uk HSCT group and a worldwide veterans group.

It’s very aggressive treatment but has a high rate of success where some people see complete improvement of symptoms, the aim of it is to stop progression though so the improvement is a bonus but not something you should expect.

I had HSCT 1year ago and still considered early days, it can take up to 2 years before you see improvements.


nutshell88
3 months ago

I know how it feels to lose sight my friend ms blinded my eye in 2005 it recovered but ive had visual static since childhood
And in 2013 i lost my sight once i opened my eyes in scotland i panicked because im not even scottish im saudi and alone.
Went to emergency i told them ms blinded me in my left eye after they checked they said no its cornea ive always had problems in my eyes cant complain


nutshell88
3 months ago

I hope you get and enjoy your vision again nothing is impossible..


jacquib
3 months ago

I was paralysed down my left side over a period of a week at age 20, after leading up until that point a very active and sporty lifestyle. Initially they thought I had had a stroke and was treated accordingly, I turned 21 in hospital. After three months I was back on my feet and back at work. Eighteen months later same thing happened but to my right side and not as severe, I only lost my fine motor movements – this is when they diagnosed me, almost 30 years ago to the day 🙂 There were no MRI’s in New Zealand way back then, and have actually just had my first MRI a month or so ago. I am very fortunate in having had the same neurologist for all those years, and a top one at that! The last 30 years have provided me with a wide array of weird and wonderful symptoms while out of remission, fortunately coming back from them all pretty darn well. I have always had a noticeable weakness on my left side since the paralysis, and now have a permanent limp. I have three children, work full time and for the most part lead a pretty normal life. With a now permanent disability I am movitated to look at other treatment options, and am as I said earlier a little tired of drugs which seem to fix one thing but break another. I have been taking hemp capsules for a couple of weeks now and have definitely felt benefit from them. I eat very healthy food, we cook every night – real foodies, I do enjoy a drink or two, and don’t plan on giving up anything I enjoy – but enjoy in moderation. I have not choice hosting MS in my body, but I tell you what it never has and never will control my body. We compromise, I try to do things in a manner that won’t make it play up and it compromises with me by allowing me to do the things I like to do (in moderation)>

hi, well…I would stress extreme caution going abroad for stem cell treatment, to my mind they only want relapsing remitting cases, and at the end of the day if your ms is relapsing remitting how would you know if it made a change? Its like Russian roulette. If you can afford to be patient, wait. There are lots of different theories, hemp, probiotic, Chinese medicine…etc. Some things work for some people. do your research. I have friends who work in drug development and they say understanding of the immune system is still not advanced.
For sight loss in my case the eye nerve is damaged which is a LONG way away before they can fix that. Have hope, but be cautious, a lot of people promise the moon, but they don.t have even a paper airplane.
best wishes

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