Last reply 1 year ago
Chemotherapy andStem Cells

My MS is getting suddenly worse, I find it very difficult to walk now, I found using a walking stick makes me able to walk further,
I have had MS since 2003 and up until the last few months I could walk a few miles, all of a sudden I am getting a lot of pain in my thighs, I’d say a 7 or 8 out of 10 pain wise, I have tried Gabapentin then amytriptaline finally nortripyline and this has cut my pain to being managable.
I watched Panerama last year, about Stem Cells/Chemo and wrote to where they did it.
I am now in the process of meeting the team who will treat me, anyone have experiance of this?
Thanks

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sandwich
1 year ago

Hello

The procedure you are referring to is HSCT.
To be considered for this on the NHS the criteria is very strict. If you are meeting the team its sounds like you may be eligible.
For anyone else reading this I belive the critiera is a sfollows but please make own enquires.
If RRMS you need to have failed either Lemtrada or Tysabri
For PPMS need positive OCB bands
Disease duration needs to be under 15 years
Need to be able to walk 20m
Need to have an EDS of under 6.5
Active MS on MRI within 12 months – at least 1 new gd lesion or 2 new t2 lesions
Approved by the MDT

This is also a trial in Sheffield with its own criteria.

There is a very good UK HSCT Facebook page which has a wealth of info. If you do a search on Barts MS Blog you can find a lot of info on there to.

Good luck. HSCT is considered by many as the most effective treatment out there.


Anonymous
1 year ago

My missus has often met the bloke who had it in Sheffield (the guy was posted on the media walking & riding a bike) & the consultant is my consultant – they are both unhappy about the way it went public & came over as a miracle cure, it’s still unproven yet, it’s quite dangerous & could kill you with secondary infections, as it wipes out your entire imune system & reboots it, It is a horrible treatment to go through, the signs were ecouraging, it did get him out of his sick bed, the guy is still mainly in his wheelchair, the consultant still doesn’t know 100% whether the results are due to the treatment, the patiebts headspace, or a bout of remitence. All that said I am watching progress closely with insider information & if it looks like it might be help me I’m kicking the consultants door in & shouting – reboot me!

TTFN


stumbler
1 year ago

Hi @tonibaloni and welcome.

There are some comments here from our respected MS professional at Barts in London:–

http://multiple-sclerosis-research.blogspot.com/2016/02/clinicspeak-reflections-on-hsct-after.html

Going back to your present problems, MS shouldn’t be directly causing pain in your thighs. This may be indirectly caused by adopting bad practice to compensate for MS weaknesses. A referral to a Neuro-physio for an assessment should highlight any problems and offer solutions.

Have a word with your MS Nurse to arrange this.

The three medications that you mention are all prescribed for neuropathic, or sensory, pain, so may be inappropriate for your present issues.

Also, if you feel that your MS is progressing, then your Copaxone may need reviewing. There are other, stronger options now available, if you are still relapsing/remitting.


highheeledfagin
1 year ago

Sounds like a job for physio. It has always been the best thing for my mobility issues – in conjunction with my F.E.S .


nicky
1 year ago

I too am treated in Sheffield. After being diagnosed with RRMS in Nov 16, I had a discussion with my neurologist about Stem Cell very recently. There is currently and international trial using Stem Cell for RRMS including Sheffield and Dr Burt Chicago Illinois, and other countries. My neuro who works with Proff Sharrack leading the trial told me. Although this is that safer stem cell treatment ( others such as those used in Canada carry 1/20 chance of death), it is by no means safe. It carries 1/100 chance of death, is quite a gruelling treatment and because of the medaling with the immune system can cause later malignancies. She said haematologist are quite prepared to take these odds if it means saving a life from cancer, however these odds may be perceived differently for someone with MS. Due to this information I have decided it wouldn’t be for me at the moment. Hope this helps you, but I agree the MS nurses are great to ask such questions of.
Nicky


tonibaloni
1 year ago

Thanks for everyone’s replies,
I’m not sure which way to go if I am offered it?
Does anyone else have weirded sensations in thier head? As if something’s moving?

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