Hello Folks,
I have been a member of this forum for a few years - even though I did not get my MS diagnosis until this year. For the last 6 years I have had a diagnosis of radiation myelopathy until January this year when I went to London and saw a Barts Neuro. All the neuros including Prof G looked at my scans and decided it was RRMS. They advised my to go on tecdifera but my neuro back home in Ireland said I did not fit the criteria to have the drug in my local authority. My EDS is 3.4/4 as I have footdrop.
Before I got the diagnosis I had already decided that I would go for HSCT and this decision was cemented when I was told that I would not be entitled to any DMDs.
I applied to Mexico last February and accepted a date for Jan 2017. Then I got a cancellation and went in September 2016. So I am back a month now and am feeling pretty good.
My neuro was against the idea and said I would come back in a box. My husband and family were not keen either. He thought I was going to a third world dump! I just wish he had come with me as the doctors, clinic and hospital were all very modern and professional. I felt really well looked after.
There were 20 in the total group . There were 5 of us on the plane from Heathrow to Mexico - 2 from Scotland, 2 from Norway and me from from Ireland.
One of the girls from Norway had just been diagnosed with MS. The group consisted of people with RRMS, SPMS and PPMS.
I know that this is a treatment not fully trialled yet for MS. But in itself it is NOT a new treatment and has been used for cancer for years. A significant amount of people have had success. One woman was diagnosed in the UK as PPMS in the UK and had an EDS of 4 went in June and has been told she has reversed her MS by he neuro and in now EDS 2. The neuro in Mexico however - before her treatment said he believed her to have RRMS not PPMS.
How am I ? Really good - my daughter came home from London 2 weeks ago and said that she as never seen me look so well. My walking is better and faster too. I have a 2 mile route were I walk my dog and for the last year could not walk it at a speed of 3.5km/h. My max for the last year was always 3.3/3.4. For the last 2 weeks I have done it every other day at 4.3km/h.
Also I am finding that my bladder is much better. I only wake once at night to use the bathroom. Before it was 3/4 time. As a result I have better sleep and do not need a nap in the middle of the day. Also for the last 3 years I have had a numb right breast/shoulder which is now back to normal. Also when standing and sitting I can lift my toes up from the floor on my bad foot. I think the reason for this is that my spasticity is not as bad.
The UK are now doing this treatment in the UK - even for PPMS. In fact you are more like to get this treatment with PPMS than RRMS. Because with RRMS you will have to a failed 2 major DMDs to get it. It is interesting that on the HSCT forums people are now hoping to get the PPMS dx rather than the RRMS because they want the treatment. There is thoughts now that neuros should not sit on the fence so long seeing if a person has PPMS. the feeling that is you get PPMS really early before progression takes hold that is may be the only option to stop the progression of disability.
I am really happy that I went to Mexico ? Yes. would I have liked it in the UK ? Yes Would I have prefered to wait until I could get it in the UK ? No - I have had MS for over 6 years and had no treatment other than baclofen offered to me basically as I was wrongly diagnosed in the first place.
Moyna xxx