Hello all, I’m a 35yo MS sufferer from Dundee, Scotland. I have relapsing remitting form but I feel it’s much worse. I have tried the injections but didn’t agree with me, felt good on Tysabri but tested positive for the PML virus, so managed to get on the Fingolimod oral treatment last year. I am not so good now, as my walking and balance are terrible, really terrible. I had another scan done in December and according to my neuro just a few weeks ago, there was not much change in the scan, infact he says I’m not acting like the scan suggests…far worse. He said the drug is doing its job, but he can do no more for me??? I have now requested all my medical records and am sending them to The John Hopkins Hospital in Baltimore which is ranked America’s #1 hospital for 21 years in a row. They get requests for second opinions and advice from all over the world. Fingers crossed they can help me in some way.
welcome to the site. whilst i understand ur ‘need’ to seek further a field,i would urge caution with doing so.
for me,theres very little they can do except treat the symptons as they see fit. theres is no cure-thats fact (as yet)
accept and cope daily is my motto…
good luck with what ever u choose to do-just be wary…
Hey chocorange, I appreciate what you are saying but feel I need to, would love to e able to walk better and maybe the concoction of meds I am on are not helping…no one helps you up here.
yeah-i am in scotland too…
do what you feel is right for you-thats prob best suggestion i have!
ellie x (who dared to question neuro and decided against his suggestion!)
*appreciates guidance from the ‘experts’ but its my body and i am the expert on it
Welcome to the site, I am from Scotland too and when I moved house in June last year I had to move Neuro and I can’t believe the difference through here. My last neuro I saw twice in 5 years now I am never away from the place lol, been put on DMD’s and see my MS Nurses at least once every 3 months. It seems there is a bit of postcode lottery going on which is terrible. Hope you get the answers you are looking for but will side with ellie on this use caution please there is no cure yet so please do not fork out any money looking for something that is just not there.
Hi and welcome.
Your post has given me pause for thought. At first my reaction was “Why bother” but then I decided that perhaps I’m just old and cynical. I’m a firm believer in taking charge of your own treatment and not sitting back meekly accepting what Drs have to give you (esp GPs) BUT I have to agree with Claire in that you may be looking for something that just isn’t there.
Having said that I heard the news report this morning about a baby being cured of HIV after getting a cocktail of drugs not the usual single one. Now I’m not suggesting there is a CURE out there for MS just that sometimes you need to push the envelope.
I have never qualified for DMDs so I’m not really able to comment but I worry that you are putting energy into something that will ultimately be fruitless. Energy that could be spent on physio and coping stratergies.