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It's not easy

Hi. I was diagnosed with relapsing, remmiting ms in august last year after a year and a half of experiencing problems with frequent urination, weak right leg and poor balance. I started taking tysabri last November. Although I have seen very slight improvements, I’m still suffering from my symptoms. I’ve had to give my job up recently because of my mobility issues. I tried to get a trial for frampyra to see if it could improve my symptoms but as my health authority don’t cover it I can’t get access to it even though I told them I’d pay for it myself. It seems very much like trying to push an elephant up a staircase trying to get treatments and benefits for that matter. Anyone else having this feeling?

I’m afraid that no DMD can promise improvements; the best we can hope for is fewer relapses and slower progression. I know that some people find that their symptoms improve when they are on Tysabri, but from what I’ve read on here, they tend to start noticing the difference from 6 months so it may be too early for you to have noticed too much of a change, if it is going to happen for you.

I can’t see why you can’t get Fampyra if you’re willing to pay for it yourself because I’m sure other people do this with non-PCT-funded meds (like Fampyra and Sativex). Have you asked your GP how it might be done? I believe that the manufacturer will provide the first month’s meds for free. If you can use that offer, you would at least know if it might help you and if it’s worth fighting to get it ongoing.

Have you seen a neurophysio about your leg and balance? They can often help with both of these things. Your GP can refer you.

And have you seen a continence nurse about your bladder problems? There is often a lot they can do to help too. Your GP can refer you here too, but you can also self refer.

As far as benefits go, have you considered joining the benefitsandwork website? It costs about £20 for the first year and is well worth the money in my opinion. It has loads of info on how to complete forms, what the questions really mean and how to deal with appeals and tribunals.

Karen x

sorry jamie, its a rough deal isnt it?

i dont know how you get on to the drugs because my ms is responding well to copaxone (allegedly)

have you seen a neuro physio? if not ask your ms nurse to refer you.

also make an appointment at your nearest bowel and bladder clinic. they have all sorts of goodies for an overactive bladder.

you can refer yourself.

i know that elephant well, its like walking through cheese!

take care

carole x

Hi, when I asked about ldn and sativex I was met with shrugged shoulders and a definite no!

Many folk get these meds via e-med…privately and perfectly legal.

I am on 20mg oxybutynin for bladder calming. Been on it a few years and it doesnt seem to be working anymore. It used to be very good.

luv Pollx

Yeah thanks. My bladder has started to improve but I still go to the toilet when I leave somewhere even if I don’t feel the need and I keep a juice bottle with the top cut off in my car just in case. I am seeing the bladder clinic and after various tests have an appointment to learn how to self catherterize. My physio has referred me to a physio centre nearby but I haven’t heard from them yet. thanks for the benefits website karen, I’ll have a look thanks. I asked my gp about trying frampyra but he said that I had to ask my neurologist for that and the neurologist told me to see my gp. I got sick of being lead a merry dance. Thanks karen and Carole. I try to keep upbeat but it’s hard sometimes when your life changes so much, so it’s good to be able to talk to other people who know what I’m going through and can advise.

Jamie x

Hi poll. I’ll look into the Internet for the drug. I never thought of that thanks. No drugs offered for the wee, just a plastic pipe. It’s not as bad as it was though so I’ll persevere.

Do you need any help with that? (not the plastic pipe…internet drugs, I mean) There are loads of folk here who use e-med.

luv Pollx

Well it’s a question of money. If it meant that I could get back to work I’d of done it but as I’ve finished work and I’m just waiting on their severance pay offer it seems that ships already sailed and I don’t want to eat into my benefits. I went on the e meds website though but as I’ve had slight improvements I reckon I’m off to persevere with the tysabri and physio. I was thinking about trying acupuncture though as some people say it helps.