went yesterday to my gp now i take LDN but wished to go up a level to see it things maybe inmproved, i have good gps, who allowed me to increase to 4.5mg a day this is via the NHS system. Yesterday went down to see if she would give me another couple of months supply as it had improved three of my main symptoms she agreed and said good three point hit, i then said i was still waiting to go see the neurologist and this had been since November she said you are obviously been lost in the system, i will contact them , said i could do it, she then asked why i needed to see him/her i said because i wanted to see if i could trial fampyra at this she said why ,you are coping ok as it is. I was flabergassed and said to my son when i got home , mum he said you should have said that you just didn’t want to cope but have the best that was available to assist with this condition, i must say felt like saying how would you feel just coping. some able bodied folk just dont get it. But will not give up
PS this is one area that has improved ‘cognitivity’
That’s great that you get your LDN from your GP. I spoke to mine about it once, he looked really stressed but he was coming up for retirement and had only over prescibed normal Naltrexone at 50mg upwards! He did say he’d look into it tho, I just get mine via internet consult and LDN isn’t too expensive.
As for Fampyra, I’ve debated this one over and over, I just can’t justify the cost of it. Can you get it on NHS where you are? I asked my neuro and he just said no - now I know that I’d need to go private etc. just to even get the prescription.
Meant to say, with PPMS not getting ANY medicinal treatment, I think if we were offered Fampyra or LDN on the NHS, I’d call that ‘a fighting chance’ - after the NICE news this week I feel pretty moody about it!
Indeed. Problem with PPMS is there’s nowt easily and cheaply available.
I’m on the lookout for some “special” brownies to help with my spasticity. Chap I know down the gym thinks he may be able to get me some, but am paranoid about the kids finding them and taking them into school…
Oh CP that made me chuckle. I’ve a friend whose aunt had ms and “special cigarettes” helped her symptoms so he keeps offering to get me some. No matter how many times I’ve declined, when he sees me in obvious discomfort he’s there with the price list, bless him, he means well. I haven’t the heart to tell him that my meds are more potent than that. Friends, you’ve got to love them.
CP - that made me giggle too… but one of the reasons I wanted to try Sativex is because it has one of the ‘special’ ingredients removed, there’s no way I could contend with a day at work if I had a puff of the real deal!
Trish, NICE are trying to stop access to Sativex and Fampyra.
Hi Trish, I looked into ldn with my 1st neuro 2 yrs ago, he hadn’t heard of it. So I went outside of his room & reached into the rack of leaflets which praised ldn findings! Neuro asked a colleagues opinion which said insufficient evidence to prescribe.
I’ve changed hospitals & neuro now. They confirmed ppms & worsening cognition difficulties, neuropathic pain & fatigue . Trish, any advice on LDN to decrease these main problems?
Hi Chrissie, I take LDN which I pay for, my worse symptoms were also fatigue , cognitive difficulties and pain. It was these things that I’d really hoped would be helped by LDN, Unfortunately it had no effect whatsoever on those symptoms, however,it has improved both my bowel and bladder problems enormously. There have been other threads about LDN if you look back, unfortunately some people, weren’t so lucky as me…worth reading before you decide . Best wishes , nina x
Cheers Nina,. I’ve recently had many bowel tests & procedures. I have bowel rectocele & prolapse so await the next hospital appt to discuss results & possible surgery. How did you decide to take LDN and your source to receive it? X
with PPMS I think a good few people use the Emed website, I think they want a letter or something confirming your diagnosis.
I got my consult via a quite dodgy looking website called prescribe for me (might be 4me), anyway, I filled out the online med stuff and I had an email from a GP the next day.
If you go on the LDN trust’s website, I think they can direct you to a prescribing GP.
Much like Nina, I found it’s helped with bladder/bowel issues but hasn’t improved my balance. Attaxia come and goes, I don’t think it’s quite as bad with the LDN tho.
Hi Chrissie, I just decided to try it as nothing else was helping…as I said I was really hoping it would help fatigue. I’m very happy with the results though! I’d tried lots of things for bowel problems …including an anal plug…it was horrible …the stuff it was made with seemed to cause an allergic reaction to the internal skin…also tried peristeen, which I think maybe works better for people who have constipation …my bowel problem is the opposite to that. I still am plagued with diahorrea but the LDN has taken away the urgency which was the main cause of the incontinence. As Sonia said if you go to the LDN trust website that will guide you as to how you can obtain it…I get mine from Dicksons in Glasgow …they are very efficient and it arrives regularly without fail, just before I run out. I was asleep when the Dr called to do my telephone consultation but he was happy to accept my husbands word that I have MS. I do hope this info helps you…feel free to ask or dm me if can help anymore. Best wishes, Nina x
Had a chat with my MS nurse from the local MS charity and we had a look at the side effects of Fampyra and in the top three was the things that have caused me issues with other medication so have decided not to go down that route, presently trying 4.5mg with LDN but may have to revert back to 3mg as it is upsetting my stomach, with 3mg h I had no side effects, i truthfully dont know if it helps with my cognivity, I feel i dont have any issues with this, and if i forget things I put it down to age i am 54. If Fatigue sets in as long as i rest i can be back to normal or as normal gets having this condition this usually happens within the hour. I know prior to taking LDN I could be fatigue for a lot longer and considering I have PPMS things dont improve naturally.
Hope this answers your question if not just private message me and i will try to assist