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Better late than never ...

Hi

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.

Kind regards.

Maryla

Hi Marla… a BIG welcome (sort of official welcome as you have been on here before) and thanks for very interesting introduction. I would have NEVER guessed that you weren’t English!!! Where are you from originally? I too was first dx with ‘mild’ MS… then ‘benign’ PPMS… at that time I was already using a mobility scooter outside and dealing with horrendous fatigue. I changed neuro’s and the new one said that of course there’s no such thing as ‘benign PPMS’… as he said, the word ‘progressive’ sort of cancels out the benign! I’m also in London…north east. Got a son of 42 who lives in Lincoln with his wife and my gorgeous 8 yr old grandson. I’m 60. very glad to have you as a member of the gang. you couldn’t be in a better place for support, friendship, advice and brilliant lunacy! See you on here again soon, Pat xx

Hi Marla

welcome to the forum,there are some lovely people on here,they made me feel very welcome i have spms,but feel more at home on this ppms forum than on the EL forum.

i too like Pat would never have guessed you were not English.

J x

Hi Maryla, Welcome to the forum. I see you are interested in politics. Well you would love Scotland just now. It is referendum this, that and the other. Somebody says this, somebody says that. I am getting more and more confused by the day. Just as well I made up my mind ages ago and I won’t be changing my mind any time soon. I have stopped trying to get my head round our illness, it just makes it sore. Just give me a nudge when they find a cure. Mags xx

Thanks Pat and mrsJ for welcoming me and being so kind about my English. I always enjoyed learning languages, had some Russian and French in my youth but none of them are good now.

I come from Poland, came to the UK to do some research on my dissertation but marshall law was imposed in my country and couldn’t go back. Was given exceptional leave to remain alongside several hundred of other Poles. Some stayed, a lot of people went back when political situation changed in the late 80s. The government here was quite generous, not any more, this status no loger exists and to be given asylum now you probably have to be dead.

All in all, I’ve had an interesting life here and to this day I admire the level of political debate and sorry to repeat the obvious, the TV. You only need to step out across the channel tiny bit to realise how bad the TV is. The country is quite unique in its history and very privileged that it’s history has been so kind to its borders and its peoples. Of course, people create their own luck but its much easier to function as a country if you are not invaded all the time.

This doesn’t mean that polical classes don’t get on my nerves, they do. Still the whole debate is of high quality something that perhaps people don’t always realise.

What irritates me even more than politians is football, sorry football fans to add salt to the injury. I’m just getting into Wimbledon tennis, a real pleasure! Are you going to be following it too?

Maryla

Welcome to the forum, Maryla lots of interesting and helpful peeps on here.

Sorry but. I am one of the people who love the football, and very sad that our team will be home Wednesday, good job Wimbledon has started, gives me someone else to cheer on.

Pam x

Hi Maryla! I’m only new here myself, but the forum has become an important part of my life. I guess it’s rather like soldiers who are the only ones who know what it’s like to go to war. We are the only ones who can know what MS feels like. I don’t think even the neuros can really know. I forgive you about the football, it’s not for everyone and it is plastered all over the telly and the papers. I’m addicted, someone took me to a game when I was 10. Love Kev

Thanks for saying such lovely things about our old Blighty Maryla. Even we sometimes forget how lucky we are to live here. I’m glad that after what must have been a difficult and frightening time you were able to make your home here. I’m not a sports fan… but appreciate that other people are so I try to keep my big mouth shut! My son is a huge Arsenal fan so I pretend to be a Spurs fan just to wind him up. Lol… it’s called motherly love. Pat xx :slight_smile:

Hi Maryla

Thanks for your very interesting introduction. Sorry about thinking you were new, I just don’t recall having seen your name before, unfortunately with my memory that’s not unusual. I have come to spend a bit of time on here, I find the people here very friendly and supportive through both good and bad moments.

I’d also never have realised you weren’t British. Your vocabulary and writing skills are excellent, you put many of us to shame as we often get loads wrong, especially spelling, though many faults are made by predictive text interpreting what we intended to say into nonsense.

We seem to have quite a lovely bunch on here at the moment and I look forward to sitting down and logging on, I hope you do too. Take care

Cath xx

Wanted to add that I look forward to our future discussions/exchanges.

Mags - I completely relate to the Scottish question, it must be very heated and confusing time. I hope people are given lots of factual and measured information which will help to make a decision. Unfortunately the debates like this get hijacked by politicians who often have their own axe to grind. The debate about the EU is similar, lots of hot air but little solid facts.

Kev - thanks for forgiving me my football comment, it looks a few more of you might have been slightly offended. Well, I’ll stick with tennis and will refrain from any soccer comments.

Cath - thanks for prompting me to come in here properly. I feel like I’ve been to a confession, strangely feel better for it.

Take care.

Maryla

You’ve definitely not offended me with your football views. I had my little rant about it last night somewhere on here but don’t want to say much more as I quite like the people I’ve met on here and don’t fancy making enemies of any of them. I’m not really in to sports as a whole. Like most people I played at school but with more enthusiasm than skill and was never picked for teams so gave up as soon as I could.

Cath xx

Hi Cath,

Thinking about school days and sports, I was useless at hockey, but good at netball, but was not picked for the team cos the PE teacher said I was too short! Never could understand that one, and still don’t now.

I went to an all girl high school, and yes I was the shortest in the class, but you wouldn’t think height would come into it.

Strange how things jog a memory off, isn’t it.

Have a good day

Pam x

Hi Maryla, Welcome to the forum…officially so to speak! Your post was so interesting. Like the others I had no idea you were not English…your English is perfect! It is so lovely that you enjoy living in the UK. It was nice to be reminded of some of the things we take for granted. Looking forward to chatting with you in the future. Nina x

Hello!

Apologies that this is short (fatigue!) but lovely to hear a bit about you

Sonia x