Just popping in to say hello as may be browsing this forum regularly! I was on the old one before it switched over but I can’t even remember what my username was so I’ve re-registered.
About me - I was diagnosed in 2007 following an episode of optic neuritis closely followed by weird tingly feet, was on Copaxone but came off it about 18 months ago as I was getting pretty bad lipoatrophy despite rotating injection sites. I’ve been more or less OK since my initial symptoms (apart from an annoying episode of facial spasms that lasted a few weeks) and was starting to think I’ve either got a really benign form or I just made the whole thing up!
Just recently I’ve been getting all my initial symptoms back though along with a few more - I currently have fizzy feet and wobbly legs, my fingertips are randomly going numb, I’m exhausted all the time, and that thing where if I look up then look down very quickly I get a weird tingly “whoosh” going up me - although it was from my feet before and now it’s my hands. (Is that l’hermittes sign?) So although not really disabling I’m generally feeling crap all the time now and getting a bit fed up of it!
So I’m going to call the hospital tomorrow to see if I can start something that isn’t Copaxone but may help! My last neuro appt was in January - I’ve just been popping in every year to say hello really so far, my eyes had started to feel a bit weird then which I mentioned so I was referred for another MRI to see if anything had changed, had it at the end of February - I’ve not heard anything but not really chased it up either.
Just out of interest, does anybody here work shifts and manage to take regular medication OK?
WEll I rang the hospital to ask for an appointment this morning - they’ve already booked me one in 10 days time and the letter is in the post! Plus my neuro appointment has been moved forward to July instead of next January - I’m guessing this means something has probably changed on the MRI.
Welcome back sorry about the circumstances though. Tecfidera (tablets) has been a good switch for me. Generally a little bit more effective than GA and a lot less fuss - just need to be able to take tablets about 12 hours apart not on a very empty stomach. But I guess you really need to know what they have to tell you. Best wishes.
That’s the trouble with MS, you manage to ignore it for a while and start to think maybe it’s given up on you! Then it sticks it’s ugly little head up and tells you ‘woohoo I’m still here’!
Chances are that if you’ve had symptoms of late that you have got activity showing on the MRI. The neurologist probably wouldn’t trouble you over the MRI results because it’s entirely possible to have new MS activity without actual relapses or symptoms. So there’s no value in worrying a person unless they have relapse symptoms.
Good news that you’ve got an appointment fairly quickly, I guess with an MS nurse initially as you say they’ve shifted your neuro appointment too. There are lots of DMDs that you can now get that just weren’t available in 2007. If you do a bit of thinking and research before your appointment then you can at least have an idea of what you’d prefer to get if it’s available to you (ie. postcode lottery allowing!). Tecfidera is obviously an easy one that should be available, but you might be able to get Tysabri as well given that you’ve already ‘failed’ on a first line drug. Or of course there’s Gilenya, or a beta-interferon (although as you’ve had ISR problems in the past that may not be a good option for you). And then there’s the heavy duty drugs, Lemtrada and the like, but you may feel that you would have to have had very active relapses to risk the side effects.
I can’t see any reason why you wouldn’t be able to take any DMD whilst doing shift work.
I’ve just been reading up and looks like I’m spoiled for choice as far as drugs go! Out of what USED to be available I’d go for Avonex, purely because it’s only once a week and in the muscle not under the skin so may not leave me full of holes. I’m also worried about flu symptoms as I even managed to get those on Copaxone and it wasn’t meant to be a side effect - so once a week isn’t so bad!
Might have to make a list of pros and cons with the others, then see what I get offered.
I’ve had a letter today confirming my MRI has showed up a new focus of demyelination in the left side of my brain - is it weird that I’m not sure if I’m annoyed or pleased about that?
I’m pleased that it’s shown something up as my MRI was before I started feeling quite so rubbish and now there’s proof so I’ll meet the criteria for starting on new medication, but annoyed as it means I definitely have MS (even though I knew that anyway, was sort of hoping there may have been a mistake haha!)
Currently sitting here with slightly numb fingers, tingly stabby feet and twitchy eye which seems to have rejoined me.
sorry about the circumstances though. Tecfidera (tablets) has been a good switch for me. Generally a little bit more effective than GA and a lot less fuss - just need to be able to take tablets about 12 hours apart not on a very empty stomach. But I guess you really need to know what they have to tell you. Best wishes.