Hi everyone
I’m still new to this whole MS thing as I was diagnosed earlier this year. In terms of being diagnosed it was all relatively quick. It all started in September last year with numbness and paralysis down my left hand side and my hand would contort into a claw, it would only last a few minutes then ease off again. The attacks could only be about 10 a day but at their worst was every few minutes. Went to the GP and was hoping for a trapped nerve but worried about little strokes. They decided to refer me to a neurologist which was escalated to an urgent request when the attacks were more frequent. The neuro was really helpful and thought it was an unusual condition which could be easily managed with epilepsy drugs but decided to send me for an MRI to rule out any underlying causes. In Jan this year I was back for the results and this is when they told me there was signs that it could actually be MS and wanted me to have an lp. Had one years ago when I had meningitus, I remember it being done but was pretty out of it so was sorer than I had remembered. I have to say that I was rather bemused being told about the MS, I’d heard the term but knew nothing about it. Looking into the condition I had had an unexplained bladder issue a few years ago that the urologist brushed aside so when I went back to neuro I told them about this, just before the appointment the right hand side of my face had gone numb, the lp confirmed the MS and with the other symptoms I told them it helped understand the diagnosis and that I have had 3 clear episodes. I’ve since been seen another neuro who has advised I am eligble for DMD’s. I’m waiting to start Avonex but he noticed that my liver results had been rather high so waiting on that settling down, had this tested and have a fatty liver so having to watch diet, drinking and exercise. I’ve had a couple of appointments with my MS nurse who has been really helpful but there had been issues which delayed me being refered to the unit.
All in all, at the moment the worst thing is the fatigue, I hate it. Poor hubby is left doing most of the driving, watching for me getting tired, and dealing with my moods. I’m finding I can get quite detached from people and being in the real world, I get caught up with having MS and trying to get used to this new world. My memory can get really bad and making lists to cope with this. But I know it could be so much worse and has made me more aware of my overall health. So here I am on a journey that I never expected to be on!
There might be things that occupational health can help you with to make some things easier, and you can ask to be prescribed amantadine - it helps some MSers with fatigue. The alternative to amantadine is modafinil (which has been a lifesaver for me), but my MS nurse told me the other week that they are no longer allowed to prescribe it to new users because it’s not approved for MS. You might be lucky though - your local PCT may not have clamped down yet.