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just given possible dx SPMS

Ivr just been for a review with my consultant. He's just told me he thinks my MS has moved on from RRMS to SPMS although I need to be observed over the next 6 months. To be honest although Ive been dx with MS for 11 years, I dont know much about SP. He did mention a possible treatment - Ive forgotten the name...a tablet that could possibly aid my walking by 30%. However ive just seen that it isnt going to be licenced now. I feel like I did 11 years ago when I was first dx - Im probably been overdramatic and I may of annoyed some of you - Im sorry, Im just thrown, its not like its come out like a bolt in the blue.

 

Anyone any help for a pathetically lost soul!!

Sarahx

helloSarah,

 

 You're not pathtic at all. It's a shock to the system to be told this. I'm sorry the drug is not going to be licenced now so you could possibly have the benefit of it. He probably has got something else that would be able to help. Speak to your MS nurse, see your consultant, but whatever you do is don't give up. We're all here and will listen.

 

Janet x

Hi Sarah,

 

just try and think its only a label that the neuros use,but its a shock when you are told your ms has moved on t ospms from rrms,i was told a few years ago, but i knew anyway,becasue i had a massive relapse, of which i never felt well after,but it still upset me to be told it.

 

jaki  xx

Hi Sarah.

The pill he mentioned will be Fampyra (aka Ampyra or fampridine). I tried it last year, but unfortunately it wasn't for me. The others in my trial were doing really well on it though, according to the nurse.

I hope it works well for you happy2

Karen x

Hi Sarah.

I am sorry that you have had this news. My diagnosis came straight in with SPMS, it did come as a bit of a shock.

As others have said, it is only a label and life does go on.

There are no DMDs for SPMS but there are developments all the time. Fampyra being one of them. it is also worth remembering that SPMS
is as variable as RRMS and anything is possible. SPMS can plateau, that is what I’m hoping for.

Good Luck!

its really a bum diagnosis - means that there is nothing officially to help.  I was diagnosed back in 2000 and progressed to spms a couple of years ago.  I have not been in contact with neuro since then as they have nothing to offer.

There are however many things you can do to help yourself.  I had ccsvi treatment a couple of times, which has really improved my quality of life, unforunately not the walking.  There is a huge amount of information out there regarding diet and supplements too - can't claim to follow all of it as much as I should but there are things you can do,

Its difficult to have to come to terms with the idea that there is no cure for this yet, but I am hoping very much that stem cells will provide us all with a way out in future.

take care and try not to get too down about it (easily said I know)!

love Suzanne

l have had spms for 30yrs- and have never been offered any treatment. l have been taking ldn for 3yrs and a highdose vitd3 and have not 'progressed' since then. The ldn certainly makes me feel more positive - its woken up the grey matter.

l am interested in ccsvi - and did go and have a doppler sound test done in May 2010 - it showed that l do have restricted flow in rightside jugular but so far l have not done anymore about it. My daughter is keen for me to have the 'liberation' treatment as she does work with a chap whose wife has had it done - and has improved a lot. She went to Poland for it.

lt would be  a bit of a gamble - as it would take all my savings - so still hoping our wonderful nhs will get their act together and provide the treatment. l do not take dmd's - which cost the nhs a fortune - in comparison to the small cost for the vascular treatment.

So pleased that it has been positive for you Suzanne.

All the best to all of you

Frances.