Two weeks ago the diagnosis came through. After months of tests and being told different diagnosis (including that it could be in my head) part of me was, dare I say it, relieved.
Now though, reality has set in and I am trying to face it, but I'm really struggling. Every time I sit down to research it, I last around five minutes before shutting down the computer and crying.
Aside from that, my biggest decision is revolving around what DMD to go on. I have talked with my neurologist and she is talking about putting meon Rebif. Although she is a great support, I have been given so many leaflets and so much information that its just a complete overload! But she really is pushing rebif, and to be honest I do like the sound of the rebismart machine, if I have to use a needle everyday, I really don't want to have to see it.
If anyone could provide me with any advice or help I would really appreciate it. Is anyone on rebif? Or used to be ?
Thank you.
Hello everyone! I need a good rant so reckon I can get away with that here....Well we all know that officially there is no treatment for spms and the lines labs tend to trot out (more tests needed) wear a bit thin when you get to my age. So I've kept my ear to the ground, and asked for referral to neurologist. Upshot is that with his approval I've been taking high dose simvastatin (80mg) and continued with HRT (tibolone). This seemed a reasonable strategy given the phase 2 trials (UCLH) which indicated that the high dose statin MAY slow down brain atrophy; plus it reduces the risk of strokes etc when taking HRT (over 10 years now). All fine, then last week American scientists' results suggest that prolonged use of statin s may interfere with the activity of stem cells and may cause accelerated aging! Oh, what to do! With ms we're already combatting tiredness and slowness. I've halved my statin to 40 mg but perhaps I should phase both this and HRT out now. I next see the neuro in December. I know the GPs and ms nurse wouldn't have an opinion. I know I'm asking questions no one can answer, but I just don't know what to do!!! Thanks for the rant. or that kind of thing... Jill xx
I was taken off my medication 2 yrs ago every one i have talked to is on medication my doc told me it was not doing anything so took me off i feel like my ms has got worse since. I have not ad a hospital appointment for over 18 months now i dont no y. my legs have got so much worse over time its like they have cramp all the time and stabbing pains also my hips seem to burn i dont no what to do as i have no one to talk to i have baclofen which dont seem to help what should i do
What medication are you all taking and for what symptoms? Are they actually working for you?
I am taking :
Baclofen = Spasms, I found they took a while to start working and i have had to have maximum dose to get any benifit out of them but yes they are helping me loads..
Deazepam= spasms and anxiety, I started on a high dose when all my symptoms started but ive managed to come off them and just take these when my symptoms flare up.. yes they do work but wouldnt want to become reliant on them..
Tramodol= for the pain, they work great for me as they are the only pain killer that actually work when pain gets really bad.
Antibiotics= perminant for bladder/kidney infections
Sleeping pills as required ....
I am just a bit curious, so if I can pick your brains, so to speak.
I read all your posts, those of you who suffer from rrrms and those who have progressed, and I just had a question. For those who knowing had rrms and have since progressed, do you still have relapses like in rrms, or is it just a case of feeling ok one day and rubbish the next? I just wondered what the difference is for you.
Sorry for being nosey, but I just want to understand this more if possible.
Sam x
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