New to this site

Primary progressive MS
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I am new to this site and would appreciate help to get started.

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Hi Ă nd welcome to the forum.

You have already made a new thread, so any questions ask away, I am sure someone will be able to help.

Pam x

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Hi, welcome to the site. You have already started with your first post. The best thing to do is to tell us a little bit about yourself. Ask any questions you need answers to, there is no subject to embarrassing to post about you will always get answers.

i was diagnoised a year ago after being misdiagnosed with fibro for 10 years. I am really only getting to grips with all Ms entails now. This board has been a great help although it is much quieter than it used to be.

ann x

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Hi Ann thank you for your reply. I wasn’t sure if I had done it right so was very pleased to see your reply. Is there somewhere I am supposed to write about myself?

lyn

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Hi Pam thank you for your reply. Making the thread was pure fluke I didn’t have a clue what I was doing. Thank you for the advice

lyn

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Welcome LC

Jan x

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Hi Jan thank you for your welcome.

Lyn x

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Hi lyn, there is no need to give any details about yourself, it’s just helps get to know people. Are you newly diagnosed?

ann x

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Hi Lyn,

You can just tell us about yourself on this thread if you want too but it’s certainly not obligatory!!

Welcome to the forum, everyone on here is lovely, very kind and supportive, it was a lifeline for me when I joined.

take care of yourself

Nina x

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Welcome Lyn!

I was diagnosed with MS in 2008 and PPMS in 2010. Had years of symptoms though. Everything was put down to anxiety!

How about you? When were you diagnosed? How are you doing?

Or maybe you’re not diagnosed yet. That’s fine. We have a few people on here who are waiting for diagnoses.

You’ve found the very best place for friendship and support!

Pat xx

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Hi Lyn

welcome to the family,there are some lovely people on this forum with a wealth of knowledge.

always ready to help.

J x

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Hi Lyn and welcome. I was diagnosed 2 years ago but I’ve also had symptoms for a few years. Any neurological disorder is difficult to diagnose and the symptoms can be varied and quite bizarre. One of the good things with forums like this is that the people usually have experienced many of them and have practical advice on coping that you’ll not find in any text book or pamphlet. They’ve definitely been a godsend to me.

Any time you want to ask a question you can click on “New thread” and ask away. You don’t even need to ask a question you can chat about anything good or bad. The people here are very friendly and supportive and rudeness isn’t tolerated so don’t ever think you’ll be laughed at. We love having new members.

It’s a difficult illness to cope with both physically and mentally and as the others have said there are no topics we don’t chat about. I hope you’ll find it as useful and friendly as I have.

Take care.

Cath x

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Hi Lyn

welcome on board. I’ve been on here a year and a bit since being diagnosed in January last year. I’ve found the forum a great source of comfort, knowing that I am not alone and there are people who understand what I feel like.

as far as actually working out how to use the forum, you’ve got yourself an avatar sorted; if you can do that you’ve got no worries.

just pitch in with anything you feel like saying or asking, or not if you don’t feel like it.

Kev x

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Hi Lyn I haven’t got a diagnosis yet but have found the forum very supportive just to hear other people are going through what you are is helpful. I thought I was going mad but find my strange symptoms are the norm here, amd the advice is invaluable so welcome to the party,Sue

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I have obviously done something wrong because my post before this one has come up as anonymous and I don’t know why :frowning:

lyn x

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Hi Sue thank you for your reply. I am looking forward to getting to know like minded people.

Lyn x

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Hi Lyn, when you write a post there’s a little box above the ‘post’ button that you can tick to have it posted Anon. It’s very easy to tick that box by accident! I’ve done it many times myself!

Pat xx

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Hi again Lyn, so sorry to hear about you mum. But of course you are right… everyone’s MS is different and follows a different course. Also there is masses of research going on into PPMS worldwide… more than ever before. It’s just a matter of time before they come up with treatments to slow progression or possibly stop it altogether. So please try to remember that.

I live in sheltered housing actually, but not in ‘extra care’. I have my own flat but there’s a manager, activities etc, and emergency cords in case we fall. I love my flat and I love living here. So even sheltered housing can be very different to what your mum experienced.

Your road to MS sounds very much like mine. Years of symptoms and always told it was anxiety (which I believed!) and then a dx of ME (aka Chronic Fatigue Syndrome) & even when there were ‘bright spots’ on MRI they still wouldn’t say it was MS. Was a lumbar puncture that got me a dx.

Very glad you have found us! You’ll never feel on your own again. You can always come on here and tell us anything… or ask anything. Between us we are a Super Team!!!

Welcome!

Pat xx

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Hi Lyn

Sorry to hear what happened to your Mum, but as you say, everyone’s MS is different, and that is the part you need to remember.

I have had MS for a long time, more years than I choose to remember, but I am still here, and whilst from time to time we can all experience down times, it does get better.

Lovely day today here in Gloucestershire.

Pam x

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Hi Pat when I read you post I wanted to smile and cry at the same time because for the first time in 7 years I felt I had found someone Who has been through the process very similar to me. I am so happy you are happy where you live too. I don’t think my mum embraced where she lived because there where similar activities etc as you mentioned but my mum didn’t want to be involved.

I am so pleased I have found this site because you and other people have been so kind,supportive and helpful. I am looking forward to being part of the super team.

lyn x

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