I posted this in the every day living bit but as we get no treatment etc. and I know some people take fampyra, guess you’ll feel pretty similar to me, Sonia x:
This makes me so angry, in fairness, they’re drugs that I can’t afford anyway (and even more so, as a likely PPMS’er getting no actual treatment), but to not have the option in the would be rubbish.
Anything I can get on the NHS to help my symptoms has me yawning at my desk, perhaps the government should get NICE to talk to the DWP if the goverment wants us to try to keep working etc.?!
I intended to read the NICE paper last night but got side-tracked - I saw my GP yesterday, he apologised he couldn’t give me the meds the hospital had but yes, I knew already… not licenced! So today, I had to email the MS team and they are waiting to speak to the rehab consultant that started this off.Hubby in foul mood given we had to go to 2 different chemists to get antibiotics I needed - and he knows I have a couple of Nabilone left and no idea how/if I can get a script and where to get it …and didn’t this consultant stress the importance of managing my fatigue?!
This wouldn’t seem to bad BUT I was up at 5 am to get to work early, so we could leave early to get to doctor’s appointment and by the time it was all done and dusted we later home, than on a regular day.
And then this morning I had to carefully email MS nurses via my mobile phone under my desk sighs
I’d just love it if I could have a little more control and comfort of my legs.
Oh well, at lest life never gets boring with MS, that’s for sure!
Sonia I also understand your frustrations, I wish there was some way to help you. I just wanted to say you’re doing marvellously coping and still managing to hold a job down. It does seem unfair that people with other types of ms have many treatments available and we’re just expected to accept and get on with it alone. Hope you feel better soon.
Thanks Cath - my husband is the star that makes it all tick
I said it on facebook earlier, it almost feels like the scientists are so proud of themselves for creating a DMD that they’ve kind of run with the theme (as they’re stuck on the rest of it!) and they just keep churning out newer/better/more effective DMDs.
It was a year since my likely diagnosis yesterday, I think I came on here, read that article and my emotions went haywire, been a bit down since really. It feels like NICE have somehow dimmed that little light, at the end of the tunnel.
Anyway, I will not sulk, I will try to harrass all I can into signed up to the Treat me Right campaign instead. And thank heavens tomorrow is Friday
Love to you all and thanks for putting up with me grumpy
Sonia we’re all allowed a grumpy day or two. I also feel that all research and drug treatments are being aimed at lengthening the remission times in rrms, I would never think that anyone wouldn’t deserve to have the drugs but the few meds available to help us control symptoms have to be purchased privately and I know they’re outside my budget.
I am however very grateful that NICE make it possible for me to continue on the vast amount of drugs I do take to keep me comfortable and the fact that I’m exempt from paying for my prescriptions because I’m sure my entire food budget would be spent on that. Although I take enough meds to keep me rattling they don’t fill the crater that is my stomach and relieve the hunger pangs.
At least it’s weekend now and we can rest and hopefully put our feet up for a while. Take care and enjoy the long weekend, hopefully the sunny weather will continue.