Last reply 1 year ago

hi , i would just like to say hello to all my friends on shift ms , as i still work 4 days a week dont seem to get much time to chat as when i come in from work i usually have something to eat and fall asleep in the chair. but i will be retiring later this year so should have a lot more time hopefully.
just wanted to ask did anyone else see the report saying that ampyra has been shown to help people with PPMS with their walking , a particular problem for me. its the first time i have seen anything that could be useful for PPMS as its rarer we always seem to miss out on treatments.
yours martin

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1 year ago

1 year ago

Nice of you to keep touch, looking forward to your retirement when you can post more. My husband is retiring in a year and 6 months, he is counting the days. Potter

1 year ago

i am likewise , no thinking of making another trip to america later this year.
martin hankins

1 year ago

I went to see my neurologist begging him for some thing that might help my walking a few years ago. I am secondary progressive and in England.
I’d also just sold my business and so had healthy bank account.
He told me about this drug, and is that it was off licence and so I would have to travel to see his mate, a private GP: Who could get me a prescription for it. So I travelled all the way to Wales to see him and when I got there, he made me do a walking test in the waiting room in front of a lot of other patients, who just stared at this drunken, weak woman, attempting to stagger down the waiting room. He then told me I was bad enough to try it… he advised me that the first three weeks of it were free, but after that it would cost £300 a month for it. I was gobsmacked at the whole process, and when I asked as to its success rate, was told that there wasn’t really enough research and that initial findings showed that the third of patients were slightly improved.
I left in tears, for my long journey to get home and did not take it on principle.
I’d be interested to hear of anyone who has taken it and anyone who has had a good results from it.
I also got an ace drug from a private water works doctor, after 18 months banging my head against a brick wall on the NHS. It is called betmiga and again, was not offered to me on the NHS, even after 27 concurrent water infections and a spell in hospital where they gave me a superBug

Go figure peeps

1 year ago

Hi Hank.

1 year ago

It did not seem to help me when I used it.maybe it’s different for every person.

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