MPD London Forum

[Val_P]

I attended my very first MPD forum this evening. I met some really lovely people there. Tonight I was able to talk to people who 'get me' who really understand what it's like to have this diagnosis and the baggage that comes with it. Thank you MPD VOICE for bringing us together.

[ElsieR]

I also attended last evening and met lots of nice interesting people, all in the same boat but don't we all look well? It is difficult to get people to understand our problems so it was so good to be able to share with others. Look forward to the November Forum when I hope to renew lots of acquaintances. ElsieR xx

[Kisses in reply to ElsieR]

Oh how lucky you are to be able to attend. Just what MPD do you have

[Val_P in reply to Kisses]

I have ET &was diagnosed 5 years ago. Although on the one hand I have wanted to attend the forums until now have avoided them. I guess I was a little scared of what I would find.

[ElsieR]

I have ET. Diagnosed last year, around April time when I was being treated for heart problems. I try not to let my health stop me from leading as full and normal a life as any 75 year old will do - I am never in !! You presumeably are not in London area but I hope they will hold a Forum you could attend as it was so good meeting so many new people with the same complaint . Best wishes E x

[Kisses]

I'm eve writing on behalf of kisses my husband. He was diagnosed with primary milofibrosis last February. Whilst undergoing bloods for shingles. Have an enlarged spleen 14cm am starting treatment on Monday of ruxolinitib. So am a bit scared of the side effects etc Trying to be positive 64yrs old

[Val_P in reply to Kisses]

Stay positive Eve ruxolinitib was showing excellent results at The London Forum. Pass my best wishes to kisses and let us know how the treatment goes.

[Kisses in reply to Val_P]

Thank you for your reply val will certainly let you know the outcome of the treatment keep in touch I hope things go well for you also .

[piggie50]

Hi Eve,

I have PV and am not taking any medication at the moment, so I cant advise, but If you go to the mpd website - mpdvoice.org.uk and go to videos, there is a gentleman talking who has myelofribrosis, you may find it helpful to watch. This site also has lots of useful information regarding side effects etc. Try and stay positive, I find it gets easier the more I understand.

Judy

[Kisses in reply to piggie50]

Piggie50 thank you so mutch for your reply I have scanned all the videos and MPD voice. In fact am looking forward to being palled up with a buddie one of those might help you also. Keep in touch.

[Kisses]

Forgot to say no nowhere near London am in Devon. Speak to you soon x eve

[piggie50 in reply to Kisses]

I live in Devon too - Exeter.

[Kisses in reply to piggie50]

Oh bless you we live in northam near bideford Would love to get a forum this neck of the woods the heamotologist clinic in Barnstaple is always buisy I'm sure there are many who attend there would be great full to attend one

[piggie50]

Yes, I agree. I am going to the mpd day in London on 16th November, but it does mean staying 2 nights in London. I work full time so I'm looking on it as a mini break!

[shellsween]

I am in Australia, I don't think they have forums here, and even if they did we are one big country. Nice to hear you all get so much out of them.