Was wondering if anyone had any experience treatment and could offer any thoughts.
it is a mega expensive procedure.
see if you can get on a trial.
look at the bart’s forum and ask your neuro if s/he knows of any trials.
Thanks for this excellent suggestion. I have just searched and found that Imperial College in London are currently recruiting for a trial. Unfortunately my husband is outside their age criteria which is 18 -50 (he is 65). However this might be of interest to others so apart from age the criteria is:
Patients with clinically and radiologically active multiple sclerosis as defined by:
- Diagnosis of MS:
Relapsing remitting MS (RRMS): ≥ 1 moderate-severe relapse and ≥1 GEL in past 18 months or ≥ 1 moderate-severe relapse and ≥1 new T2 lesion in past 18 months.
Secondary progressive MS (SPMS) with an increase of ≥ 1 EDSS point (if baseline EDSS ≤ 5) or 0.5 EDSS point (if baseline EDSS ≥ 5.5), in the previous 18 months and ≥ 1 GEL in past 18 months or ≥ 1 moderate-severe relapse and ≥1 new T2 lesion in past 18 months.
Primary progressive MS (PPMS) patients with positive oligoclonal bands (OCBs) in the cerebrospinal fluid (CSF) and an increase of ≥ 1 EDSS point (if baseline EDSS is ≤ 5.0) or 0.5 EDSS point (if baseline EDSS is ≥ 5.5), or quantifiable, objective evidence of equivalent progression in the previous 18 months and ≥ 1 GEL in past 18 months or ≥ 1 new T2 lesion in past 18 months.
Now the results of the Biotin trial are in - l have started to take Biotin. Not in the high dose used on the trial - but l am starting where they did 100,000mcg daily. For once a med that is cheap to buy and has no side-effects. Already, after a couple of weeks l have found my mobility improved and far more energy. As yet, l have not mentioned anything about it to my friends and family. l am waiting for someone to comment. My hair/skin/nails have improved - so what is it doing inside.
Glad now that l did not start taking Fampyra - and also glad l did not go down the HSCT.
Hopefully, benefits will continue as l get to a higher level of Biotin. l joined the facebook group Biotin for Progressive MS - and this ‘community’ are trying to find a good source of pure biotin that can be bought cheaply. £15 a month is the price so far.
Ok, thanks will look into this. Hope it continues to give good results.