Eric T / Sewing chick Tks for replies. Really must try fampyra asap. Will ring neuro’s sec if no response next week. Must not ignore the opportunity of improving my quality of life. I may be one of the people it works for - thinking positive for a change. Tks Tony
Hi all haven’t been on here for ages but thought I’d share my Fampyra news! Dec 2012 Free month trial Jan 2013 walking speed doubled and fatigue improved private prescription £230 per month. Asked for help from GP no can do! March 2013 prescription down to £182. Continue to be doing well. June 2013 new supplier of prescription, forms failed to go through in time so had a 48hr break in medication. Within 24hrs my walking had become slow with dragging feet and fatigue returned like pre Fampyra days I’ve been back on the drug 24 hrs and my walking pretty much back to normal although still a little fatigued but still early days! I just wish this drug would be passed by NICE and everyone could have the opportunity to try it! It is my lifeline. This week has proved to me that it works!
Thanks for the update, I am gathering info. for my visit to my MS Consultant Sept. So cheers for that and I’m pleased it helps. M
HellMS, I feel so much better today back on Fampyra since Wednesday. It has made so much difference to my life Hope you get the chance to try it, that’s all I ever wanted! Now just need funding and more people speaking out of it helping them 
Hi chris52. Pleased to hear youre getting a positive response from fampyra. I am also seeing my neuro in july/aug hoping to try it. I am quite sensitive to most drugs thus am somewhat wary taking something new. I was wondering in your situation have you been diagnosed with ppms/when. Do you use a stick ? Perhaps not now with fampyra benifits ? . Sorry dont mean to be intrusive. Tks Tony
does fampyra help you tolerate heat better?
Morning, I was diagnosed 3 yrs ago with MS, but like others think I had 25yrs! I went to GP when tripping and falling over. I was under a consultant that couldn’t decide whether it was RRMS or PPMS. Last June my MS nurse referred me to another consultant at Queen Elizabeth Hospital Birmingham. He watched me walk across the waiting room and knew straight away it was PPMS! He said he’d put me on his list for Fampyra. In December 12 I had my free trial within a week I felt a difference. Fatigue had almost disappeared and walking speed doubled. Went back in January 13 for follow up and consultant said I’d responded better than any other patient! I still use my crutches when out and about. Scooter for shopping! But round the house I can manage without or use walking stick! I don’t tolerate sun/heat any better knocks me off my feet! I didn’t think I would respond so well to Fampyra as I am also sensitive to lots of meds! As I said in earlier thread I was without Fampyra for 48 hrs this week and could hardly move! Feel great now!
I’m frightened to think what a difference this could make to my life… I’d not long finished saying ‘they’ had nothing for me and I was going to live without hope! Why should anyone live without hope/chance? Take care folks, be safe M x
Chris52 tks for your info. My legs and knees have been aching and weak for the last few weeks. Went to doc and asked for a prescription for baclofen as thought it may help. After 3 days of 5mgs only 3 times a day my condition worsened so i stopped taking them . Still not back to “normal” after 5 days – have also had bad cold and flu symptoms so I’m sure thats not helping. Hoping to try fampyra when i see neuro in jul/aug. Tks. Tony
Tony, I too reacted like that to Baclofen! Awful? Really hope you get to try Fampyra. Chris
Chris52 Interesting to see you reacted badly to baclefen too. Must try fampyra - seeing neuro in July/aug. Tks. Tony
Hi there
I hope no one minds me posting? My mother has been offered Fampyra as a trial a year ago and is still waiting for the perscription. She has been told she has to pay, which is fine, however its the waiting for the perscription to come through and also the anticipation that this could be the drug to help her walking. I would like to ask whether anyone else had experienced the same in getting the perscription.
Many thanks
Martyncav