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25 June 2014 @ 07:01 am
Has anybody here taken Aubagio? My neuro is thinking about a change to my meds, because I've had the infamous post-injection reaction to Copaxone too many times. Also because I haven't had an MS relapse for over 3 years, but I don't understand her logic there: if Copaxone has stopped my relapses, please don't take away my Copaxone!

Note to this comm's Mod: please can we have an 'Aubagio' tag?
07 September 2013 @ 06:39 pm
Somebody told me to look up Hilary Freeman so I did. I'm liking her attitude and the way she makes her living by doing something that she *can* do.

This lady could have fallen into the trap of being cripspirational but in my opinion, she doesn't. She's saying things that can be said if you know what disability feels like from the inside.

But there's one thing I dislike about Ms Freeman's words. She says, several times, that she feared a possible wheelchair future. As though a wheelchair were the ultimate disaster. Now she uses her lack of wheelchair need as an example of how her MS isn't so bad. She needs to get past that, say I, finding my wheelchair very liberating.
I posted a few weeks ago that I was starting Tecfidera (I think it was BG-12 in studies). I am in week 4 and have been on the full dose since week two. I have had very minimal side effects. I had diarrhea a couple of days but can not tie it to the Tec for sure as I also was a bit dehydrated. No flushing or any of the other things they warn about. This is the least side effects of any DMD I have done. Granted I only did Rebif and Avonex. The best part is NO INJECTIONS. The injections caused me anxiety that meant I was not doing them as I should have been. If anyone has specific questions feel free to ask or even message me. I am hoping that since I am taking this properly it will slow down the progression of this dumb disease. In the last 18 months I have gone from a very part time job to having to go on disability and I also have to have a cane all the time. Mind you I am glad to have the cane versus the alternative but I could do without any more progression. I see my neuro again in August and we are going to talk about ampyra. Has or does anyone else take that and would be willing to tell me about it? Well off to do another bit of time on the kitchen and other housework.

Current Mood: ecstaticecstatic
I've just received this email.

'I will be on BBC Radio 5 Live tomorrow together with Prof Robin Franklin and other MS researchers discussing some of the pioneering projects you're helping to fund.

It would be great if you could tune in.

We'll talk about myelin repair, progressive MS and newly available treatments. You'll hear first hand how your donations and campaigning are helping change people's lives and the challenges which lie ahead.

Shelagh Fogarty show, BBC Radio 5 Live
Tuesday, 9 July

If you can't listen in, please check out the Shelagh Fogarty show on BBC iPlayer.

I hope you enjoy the show.

Best wishes,

Ed Holloway
Head of Care and Services Research '

Request to this comm's Mod: please can we have tags 'myelin' and 'progression'?
02 July 2013 @ 08:29 am
I got my starter pack of Tecfidera(BG-12) yesterday. I have read up on it including some forums and blogs I came across. I am doing what most people seem to recommend. I ate this morning, took some aspirin and some benedryl. I also have a nice cold bottle of water waiting on me. I really hope this works for me because I am beyond sick of injections. Any else on this? Anyone interested in me posting about how it goes? I have all my fingers and toes crossed and have said some prayers. I am also posting this in MS_Support

Current Mood: hopefulhopeful
10 June 2013 @ 08:54 am
Does anybody here take Colpermin for MS-related irritable bowel syndrome (IBS)? I've just started taking it.

PS to the Mod: please can we have a 'Colpermin' tag?
11 September 2012 @ 02:05 pm
This morning, I experienced something new to me: my right hand felt as though it was carbonated. It was tingling.

As I'd just woken up, Per said that maybe my hand was still asleep and not ready to wake up yet. This was my response:


It makes me wonder whether other folks who have to deal with MS have felt this sort of thing, as well.

I vaguely remember -- as my memory doesn't seem to work well these days -- someone else mentioning the tingling feeling.

Current Mood: pensivekitties think TOO!
There's an article about heat and MS here. It seems weird to post this link now, from Britain while we're having an exceptionally cool and wet summer, but I know that N America is having the opposite of that.
I'm grateful to clms1 for telling me that Mitt Romney's wife Ann has MS. Here in Britain, we get a lot of news coverage about American politics but I don't always follow it since I have no vote there. Anyway goofle has just led me to this. Some of that site's links may be interesting.
It's been announced that Jack Osbourne has multiple sclerosis. Oh no, I'm so upset for him.

The article I've linked to here doesn't say which kind of MS Jack has. If he decides to 'raise awareness' I hope he'll try to tell the media that there are 4 main MS diagnoses and they aren't all the same. Right now he's quoted as saying 'I've got MS but I'm determined to overcome it' and I'm thinking, yes, I remember that. It's what I said when first diagnosed. I did make some good decisions (went on a health kick and got my weight down; went back to University and got a PhD) but a lot of what I've done since then has been about learning a little humility. This disease is not for overcoming.