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@tonibaloni 

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tonibaloni

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
@Sandwich
 

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.

@Stumbler
@Stumbler
 

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.