Following lovely Cath’s earlier suggestion I thought I’d introduce myself. I have been coming to MS society forums for some time posting occassionally but never introducing myself properly.
I was diagnosed 8 years ago, was never given MS type but for the last 3 years I’ve been seconday progressive. It was a forth attack which now I know was a relapse which led to the diagnosis. My previous relapses were relatively mild and only on one occassion I contacted my doctor, had some numbness in left arm and right leg, but he didn’t recognized the symptoms and suggested that I may have overused my arm (!). I went to the doctor again several years later when I had serious numbness/hug on my left side. By the time I saw a neurologist and had a MRI I was fine symptom-wise. When the neurologist told me that I had MS it obviously was serious news but as I was feeling fine I sort of put the diagnosis at the back of my head and didn’t think about it all the time. My only symptom which I knew was strange was when walking for about an hour and feeling like I walked miles and miles. I never experienced pins and needles or spasms or pain.
Anyway, my original neurologist hasn’t recommended any medications apart from amantadine. I think he was from the old school not keen on DMDs. Since then my MS has been described as mild but in fact this label irritates me a lot. Eight years on and as far as I am cocerned it’s anything but mild. Whilst I don’t experience pain or other issues my mobility is affected most. I still walk without any aids, when I’m at home I manage fine but outside need support of someone’s arm. And I’m reminded of it every minute of the day, except when I sit, then nothing bothers me much. I tried Fampyra but it didn’t do anything for me.
The only medication I take is LDN and amitryptyline but the latter only occassionally. Other than that I take vitamin D3, B12 and some anti-oxidants such as CoQ10 and Alpha Lipoic Acid. Of them all probably the LDN is most helpful but my mobility has got little worse whilst on it. Then I don’t know if I would be worse without it. I’m on low gluten diet, I’m not sure that it makes any difference. I don’t do enough exercise, research shows that it makes a huge difference but I only do the minimum, have to do more.
I manage to work 3 days a week from home and I’m very pleased that I can do that. Being able to engage my brain is v important to me. My organisation (charity) has been taken over by another and the process was very stressful, only in the last couple of weeks they confirmed my job.
Other than this I’m 55, live in south-west London. I have two children, my younger daughter graduated last Saturday. It was a fabulous day, great weather, well organised ceremony. I was worried about not making a scene of myself particularly that I knew my daughter’s boyfriend family and her friends would be there. But the meeting was fine, very pleasant people, I think generous in spirit. And of course at my daughter’s age it’s difficult to know if it’s serious or not.
I should also add that (as you can tell) I’m not English, came to live here over 30 years ago. In fact at my daughter’s graduation it occurred to me that I graduated exactly 30 years ago from Leicester Uni, doesn’t time fly!
Other than that I’m interested in politics, history (know English history pretty well), enjoy reading and cooking, with limitations.
I also read quite a lot about MS, have a few websites/fora that I check daily. Trying to get my head around this complicated disease and what is actually happening to your body. In this I feel we are alone, the specialists know very little and in fact repeat various myths which they shouldn’t.
So that’s me, hope I haven’t bore you to death. I’m really quite self-contained and prefer not to dwell on myself at all.