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BACK FOR GOOD
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TOPIC: BACK FOR GOOD

BACK FOR GOOD 27 Jun 2012 21:00 #1734507

  • janet
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hello everybody

I was diagnosed seronegative MG 3 1/2 years ago. I have partaken of the full range of medications and have now settled on IVIG every 8 weeks, 10mg pred and 25mg methotrexate weekly plus loads of mestinon and tablets for the side effects of the side effects. i also have coeliac disease and autoimmune thyroid disease.

anyhow having been in denial for ages I realised that I could really do with some MG pals who 'get it'.

I have dipped in and out for years but have realised I need to become a part of this different world we all inhabit.

Looking forward to a 'meeting of minds'!

Re: BACK FOR GOOD 28 Jun 2012 06:57 #1734515

  • ragdoll
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Hi Janet,

We all use the forum for different reasons, it is here for however it can help you (or you can help it), whether it is for a brief period when you need something something specific or longer term as a 'regular' which is how friendships build up.

I have sent you a friend invite.
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Re: BACK FOR GOOD 28 Jun 2012 08:43 #1734521

  • CarolO
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Hello Janet,

Welcome to the forum - we are pretty normal really apart from the reason we are all here and sharing-and that does not mean we are not normal everyday people.

I was lucky, when I was first diagnosed, my MG nurse gave me this website and it's been a great source of advice and support over the last 3 years since diagnosis.

Nice to meet you.

Carol
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Re: BACK FOR GOOD 28 Jun 2012 08:54 #1734522

  • janet
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I hope I didn't sound 'off' with my my post. i think i have just finally realised that my MG is never going away and will always be underpinning my life.
having said that I am very ordinary, plodding along managing to work part time for a brilliantly understanding charity and i have take alot of comfort over the years from viewing the forum.

I am lucky enough to have a fantastic GP neurologist and MG nurse but it doesn't feel enough any more. hence making the decision to join in properly and offer and receive support.

was that face i attached the wrongone -I thought it was a grin! if it meant angry can you take it off please Palo!

Re: BACK FOR GOOD 28 Jun 2012 09:51 #1734523

  • Joyce
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Hello janet,welcome back to forum ..... I'm new here too.I have Lem's but of course we are all myasthenic's & have alot in common apart from illness I'm sure there are loads of stuff we could share to build up friendships.I'm sorry I don't know anything about this friend invite otherwise i would be your friend.This is all new to me too !!.Also it seems you can be on facebook too ??.God Bless from Joy (joyce).

Re: BACK FOR GOOD 28 Jun 2012 18:35 #1734530

Hello Joyce and welcome
xx Di

Re: BACK FOR GOOD 28 Jun 2012 18:41 #1734532

  • ragdoll
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That's ok Janet, I think you have removed the smiley, I don't know what most of them mean anyway so tend not to use them.

We all have our own unique style and way of expressing ourselves and that is what we all bring to this 'conversation' as well as our differing perspectives, views, knowledge, ideas, experiences, some of us are more reserved and others less so, that is what makes it all interesting and the world go round as they say!

Re: BACK FOR GOOD 29 Jun 2012 10:42 #1734561

  • alice
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i think i have just finally realised that my MG is never going away and will always be underpinning my life.


I believe it takes time for all (or at least) most of us to reach this understanding and come to terms with it. And probably we never fully do.

I recently realized, while talking to my neurologist, that I was trying to keep working and continue as much as I can with what I was doing so it will all be there when my illness disappears and I can go back to lead a completely normal life without having to start everything all over again.

He helped me see that all those "temporary" measures I gradually found actually enabled me to lead a reasonable productive life and it is not so bad if I have to keep on living like that. And that every improvement in my condition (even if relatively mild) makes it even better. Although, he too, still hopes like me that this illness will disappear one day. (he keeps on saying that this is such a "crazy" illness, we can never know).

Its great that you have a good team of physicians you can rely on.
Last Edit: 29 Jun 2012 10:48 by alice.
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