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Confirmation of PPMS

I finally got confirmation from my neurologist today that it is indeed likely to be PPMS. The news came to me on an upswing, recovering from a migraine, so I was almost euphoric, singing that well known song (to myself, not out loud, lest people think I’ve finally lost it): “I’m still standing, yeah, yeah, yeah!” (Well, most of the time, or on walking poles at least.)

It’s fine - no surprise - and I’m very happy to be in such good company with you lovely folk. Thanks again for your support, particularly on the first post I put on this forum.

More Pilates for me!

All the best to all.

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Lapwing it seems wrong to congratulate you but it probably feels euphoric to have confirmation that your not going mad, I know that’s how I felt. Take it steady and mind out with those poles.

Don

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I completely understand you, Im sure you have already done all the crying but to be believed at last!!! and know you are not crazy I identify with that, I’m still at the [crazy] stage but if I ever find out, I will be so relieved and I won’t be asking questions like will I end up in a wheelchair, I’m already in it! You take care I’m sure even though your happy its tinged with sadness, but maybe you can have some closure and start planning some adventures, remember be kind to yourself

Michelle x

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Hi Lapwing

I know what you mean, it comes as a relief almost, just to know you have been believed and are not going mad.

You are among good folk here, but be kind to yourself and take one day at a time.

Pam x

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Well done Lapwing! It’s such a relief to find out what is actually going on.

Pat xx

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Hi lapwing,

I’m pleased you finally know what’s going on, it must be a huge relief for you…even though it’s a club you would have preferred not to join!

Take care of yourself,

Nina x

Thank you all so much for your kind words.

Can I recommend a booklet published in 2014 - so very recently - by the MS Trust. This was the first time I read something on MS that made me think; “That’s exactly like me…” Up until reading this I was a bemused by all the talk of relapses, remission… It is not at all doom and gloom to read and is very enlightening. So if you haven’t read it already, you can order the hard copy from them or download it here: http://www.mstrust.org.uk/shop/product.jsp?prodid=352

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Lapwing as the others have said it’s one of those mixed emotion things: happy to finally know what you’re feeling with, but still not a group you want to join. Although you’re on a bit of a high with relief at the minute you may still suddenly hit a wall where it all sinks in and feels really overwhelming. I remember going to see my dad who’d been with me when I got the news and wanting him to tell me it really has happened.

Just remember that it’s normal to be upset but the people in this group are a real support and full of wisdom and experience. They really do understand and are here for you. Take care of yourself.

Cath x

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Hi Lapwing

just to say thanks for the link to the MS Trust publications. They are very good. I have been very lazy about getting myself properly informed about the condition (partly, I guess because I do feel I have been well informed by my health care people) but it has been very educative to read some of the books.

i hope your journey into knowing you have PPMS continues as smoothly as possible. I remember that weird feeling of relief too! Finally having a name I could put to it after some years of vague bafflement was great, despite knowing what life now entails.

Kev x

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Thank you all! At least 14 years of managing PPMS, here’s to many more, or preferably a new medicine to treat it! From what I have read, there is a huge international drive towards this now, so let’s keep on fighting folks!

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