Can I ask why you feel this is neccesary Tony? Nina
Ninagrace - because this is a site for people with types of ms. it’s difficult enough cross referring information already . Moyna posting is fine - just mention she has not got ms at the beginning please. I’m hoping to start taking fampyra in a few weeks and trying to analyse how different people are getting on with it. Moyna posts saying she has been taking fampyra, not got ppms but in fact she has not been diagnosed as having ms. I know from previous posts that Moyna has not got ms but others may not. Tks. Tony
Ninagrace - because this is a site for people with types of ms. it’s difficult enough cross referring information already . Moyna posting is fine - just mention she has not got ms at the beginning please. I’m hoping to start taking fampyra in a few weeks and trying to analyse how different people are getting on with it. Moyna posts saying she has been taking fampyra, not got ppms but in fact she has not been diagnosed as having ms. I know from previous posts that Moyna has not got ms but others may not. Tks. Tony
Tony, I’m sorry but I think it’s vitally obvious that although Moyna does not have an official dx she does have progressive MS. Her consultant would hardly have prescribed frampradine if he didn’t think it was pretty clear I think it’s most unkind to make this sort of comment to someone looking for help. It may be otherwise on E L but here on PPMS we try to be kind , helpful and supportive NOT critical. Had I received a comment such as yours when I first came on to the forum it would have put me off for good. Don’t you think that we all have more than enough to contend with without criticism from people who should be more understanding and know better? Please forgive me for being blunt but I would defend your rights just as quickly. Regards, Nina
Hi Tony, I agree with Nina.
There are no hard and fast rules. This is not an academic site but a site for people to come for all sorts of reasons… inc friendship and support.
Moyna has always been very open about not being dx with MS (yet). But as Nina points out, her consultant would hardly be prescribing the drug if he didn’t think that she had MS.
It’s worth clicking on a person’s user-name and reading some of their previous posts if you want a clearer picture of their history.
But please don’t forget that we are here primarily to support each other and would not be a very welcoming place if we had to start each post explaining exactly where we are in the MS spectrum.
Hope that explains it and you are able to find useful information on the board.
Pat
Tony, PPMS is a possibilty otherwise I would not be here. I have a spinal cord issue giving me the same symptoms as PPMS. I am om MS drugs such as baclofen and have been on steriods too. I have tried fampridine for walking - it is supposed to send impulses through damaged spinal cords which is what I have. I did mention on this thread that I had no dx yet.
Moyna xxx
And us ‘lucky’ few with PPMS know Moyna and she’s very at home here 
Sonia x
Moyna Feel like just had a round with Mohamed Ali ! Took it on face value that when you said you didn’t have ms it was true. On reflection what’s been said you certainly have symptoms of ppms but not yet diagnosed by consultant. I did not mean to upset you. I was trying to carry out an accurate analysis of fampyra before maybe taking it soon. I say maybe because recent posts on here and the living site have been somewhat discouraging. Regards. Tony
Sorry Tony! I’m not really a bully! Hope you took it in the sprit in which it was meant…as I said I’d be as quick to jump to your defence if needs be! Regarding frampradine …I too am hoping to start free trial soon but as you say recent post have been a little disconcerting. I mentioned it to my MS nurse yesterday…she has had 8 people who’ve done the trial 4 responded extremely well and 4 did not …but they have not got worse. For me fatigue is a much bigger problem than walking and this was also the case for my nurses patients. On balance I’ve decided that I shall go for it…when my neuro eventually gets around to writing the prescription …I’ve only been waiting since June ! Nina
Thanks for that info Nina, it’s good to know and if my walking carries in deteriorating at it’s current rate then it might just be worth a go!
Tony, don’t feel beaten,we just look after each other and that includes you too 
Sonia x
I did read somewhere , I think it might have been on the Barts MS blog were the prof g was worried that fampaya might put extra strain on existing damaged axons making them more damaged. Before I went on trial I asked my neuro on this and he said that was rubbish. Prof G is also wary of too much exercise on damaged axons too. I as yet dont have a PPMS dx yet but whatever it is it is so similar.
Basically I had a MRI is June which showed that Lesion had resolved. Was told that there was probably some permanent axonal nerve damage which cannot be seen on MRI. Was also told that I shouldnt get any worse. I tried the fampaya in July and it immediately made me worse so I didnt finish the trial (took it for 3 weeks). My foot drop and spasticity is far worse than it was in June and it has been like that since August.
Everyone is different and it has made big improvements to some. One thing for certain is that it will make a dent in your pocket!
Moyna xxx
Hi
Not being negative, just honest! After 3 weeks of taking Fampyra my walking was actually worse and my Neuro told me on the telephone to stop taking it. I did and returned to “normal.” Glad I tried it, gutted it didn’t work for me but it does seem to of helped a hell of a lot of people which is great news. Just proves the point that everyones MS is different really. I think if you get the chance, give it a go.
Best Wishes
Steve
Sorry we came in donning boxing gloves Tony!
I certainly hope it hasn’t put you off using the board. You are of course very welcome on here and I hope you are finding some of the info useful.
We really are a friendly little gang and hoping we see you on here again.
Pat x
Hi - this is my first post here on this forum. I couldn’t find a category for Secondary Progressive MS, so have popped into the PPMS section. I am on my second day taking Fampyra. I am feeling very optimistic and also feeling sick! I know there are some people who can have side effects, and I guess it’s just the luck of the draw.
Q. Do the side effects dwindle after you’ve taken the medication for a while? I’m getting bouts of headache and nausea. Not all the time, periodically during the day.
I didn’t really want to say I felt improvement on day one as it could have been wishfull thinking, but today, I without thinking just bounded up the 5 steps to my front door. I got to the top and thought - golly, did I just do that! My usual technique is to lean on the wall and drag my wobbly self up with difficulty. So I am feeling rather excited that the tablets may be working. Early days, but golly it would be nice!!
I live in Brittany France. I have been diagnosed just two months ago with Secondary Progressive MS. I was told that there was nothing they could give me. Except for this new treatment that increases walking speed. I have read on the forum that it has been life changing for some. Not so for others.
Anyone else with MS living in France? It would be good to communicate if there is!
I asked my physio this morning if he had any other patients with MS. Just the one aparently.
I’ll pop on the forum again to let you know how things are going. I have to have a blood test after 15 days and a walking speed test with the neurologist.
Snow leopard - no problem. Trying to be humorous. Incidentally re fampradine, there’s a positive post on cherry lady’s everyday living blog re fampradine from johnh. Bye. Tony
Hi Lostinfrance and welcome
I’m in the UK and I’m not sure that anyone who posts in the PP section is from France, perhaps start a thread in Every Day Living and hopefully someone will see it
That’s really good news about the Fampyra but shame its making you feel ill! When you say you bounded up the 5 steps it made me think… in my head, that’s still what I intend to do and then I wobble! LOL
Fingers crossed you find someone near you soon
Sonia x
Hi Nindancer - Sonia,
Thank you for responding. I’m on day three and today I could eat my lunch and use my fork. Usually I get half way thru lunch and have to give up using my left hand to eat. The energy I needed to use my left hand was exhausting. Today I just ate lunch. I said to my husband - I just ate my whole meal using my fork in my left hand! Another sign that the Fampyra is having an effect. I still get moments of nausea. I wonder if it will improve as time goes on?
I know what you mean about the head and the wobble! I have vertigo and balance issues.
Batten down the hatches - I think a huricane is on its way! It’s coming to France as well!
Bon Weekend x
I’ll pop into ‘Every Day Living’ as you suggest. thanks!
Lostinfrance - great news to hear that fampayra is helping you. I was given a booklet by my neuro produced by makers of fampayra "Biogen idec Ltd dated Nov 2011. In it Re side effects of fampyra it says:- Very common side effects (affects more than 1 in 10 patients - urinary tract infections. Common side effects (affects 1 in 10 patients in 100) felling unsteady, dizziness,headache, felling weak and tired, difficulty sleeping, anxiety, tremor (minor shaking), numbness or tingling of skin, sore throat, difficulty breathing (shortness of breath), felling sick (nausea), being sick (vomiting), constipation, upset stomach, back pain. Uncommon side effects (affects 1 in 10 patients in 1000) Seizure. If you have a seizure please stop taking fampyra and tell your doctor immediately. If any of these effects start to bother you or if you notice any side effects not listed here, tell your ms doctor or nurse as soon as possible. Best of luck Tony
Visited my neuro about a month ago. He was quite happy to arrange for me to have a free one months trial of fampyra which should arrive in the next few days. Trouble is I’m somewhat concerned now about taking it after re-reading some of the posts of a month ago ie - Now feeling worse after taking fampayra after stopping / made me quite I’ll / no benifit at all. On the other hand some people benifitted considerably after taking fampyra. Could some of you posters please give an update on how you are feeling now, a month later, particularly those who were worse after taking fampyra than before starting. I hope you are now back to normal ( pre fampyra ). I also have an additional worry In that I 'm quite sensitive to some drugs ! Rarely a dull moment with ms. Tks Tony
Hi, I’ve been taking Fampyra for a year on 14th December! Had first month free. Then self funding which is becoming harder as the months go by! My walking is better and so is my fatigue. I still use a stick at home and crutches when going out to car and short distances, mobility scooter when in shopping centres! I take it at 8.30am & 8.30pm. I would say I move best between 10am and 6pm. My only side effect is balance, sometimes I’m a bit wobbly! But I think I’m better on it than not! Did have a two day break as prescription was late, I could hardly move my legs. My advice to all. is if your consultant will provide the free four week prescription then go for it! Everything is worth a try to get some quality of life back!