What Next

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martin

What Next

Post by martin » 07 May 2009 19:15

I was diagnosed with MDS on the 10th March.....I was given a booklet about MDS, given an appointmentfor six weeks later so I had all this time to worry about what MDS meant to me

I had my appointment two days ago.Well armed with questions and a three hour wait
I saw the consultant(a different one)

I asked my questions but gained no further info than I got of the net(less even)

He said my bloodcount was 10(and stable) and I was to go back in six weeks

My main question to him was (Is MDS progressive? or can the severity be spontainious?
He didn't respond

I think I am on something called "Wait and See"

Confused
Cheers
Martin
Nigel

Re: What Next

Post by Nigel » 07 May 2009 19:44

Hang in there Martin, meant to be finishing the risotto but caught your message. Just to say, you're not alone in this and I or others will catch-up with you tomorrow.
Best wishes
buttnorm

Re: What Next

Post by buttnorm » 07 May 2009 20:07

buttnorm Posted: 07 May 2009 20:02:04
Dear Martin,

You may be like me so hang in there i was diagnosed on the 8Th March 2007, but as to this date i have not had to have any treatment as yet only regular blood tests. the only advise is if you are going to a local Hospital for treatment i would recommend you find your nearest place of excellence that gives treatment For MDS. And ask your local GP to refer you to it because you will get far better treatment and be kept more informed.

All the best
Norman
Nigel

Re: What Next

Post by Nigel » 11 May 2009 18:28

Hi Martin
just looking around, and I found the following list of MDS centres of excellence (MDS Foundation website):-
United Kingdom

King's College Hospital
University of London
London, United Kingdom
Ghulam J. Mufti, MD

Leeds General Infirmary
The Leeds Teaching Hospitals
Leeds, United Kingdom
David T. Bowen, MD

MRC Laboratory of Molecular Biology
Addenbrookes NHS Trust
Cambridge, United Kingdom
Alan J. Warren, PhD, FRCP, FRCPath

Queen Elizabeth Hospital
University Hospital Birmingham NHS Trust
Birmingham, United Kingdom
Charles Craddock, MD

Royal Bournemouth Hospital
Bournemouth, United Kingdom
Sally Killick, MD
I'm not sure what the "rules" are, but it seems to me that you should be able to get a referral from your GP to one of these centres.

I had assumed that most haematologists (which I asume your consultant was) would know quite a bit about MDS by now as I understand the MDS foundation have been "leaflet-ing " on the subject, but I guess it is also down to how the consultant "handles" the situation.

Looking here on the forum and elsewhere, it seems to me that sometimes you do need to "make a nuisance of yourself" and insist on a few answers - maybe even to the point of asking to see a different consultant - it's your life after all (something that the consultants should take into account)!

I should say that others (me included) have had completely different experiences and there are some very good and capable people out there.

I for one find the blood count numbers very confusing, but I know one of the MDS leaflets makes an effort to show what "normal levels" are for the various cell types; I had always meant to keep a track of mine against the norm to see if I could account for how I felt.

Anyway, hope things are not too bad with you and that you can see some positives

best wishes
Nigel
whiskers
Posts: 19
Joined: 31 Mar 2009 15:41

Re: What Next

Post by whiskers » 12 May 2009 13:59

Hi Martin
I know just how you feel but I agree with Nigel, you should ask to be referred as soon as possible to a 'Centre of Excellence' (I am at King's College Hospital, South London, it's a 120 mile round trip each visit but well worth it) where you will get better treatment, better information and better support. You would have to look at Nigels list to see which is nearest you.

Please see my initial article I posted on this MDS Foundation website on 31st March 2009 for my experiences up until March. See:- Contact Requests-Members Only, Myelodysplastic Syndrome My Story so-far any comments?

Best wishes

Whiskers (John)
Bec
Posts: 3
Joined: 21 Jan 2010 13:15

Re: What Next

Post by Bec » 21 Jan 2010 16:43

Martin
I am brand new to this site today and have been reviewing the forum. I hope things have progressed well for you as there have not been any postings for a while. Really helpful list from Nigel - I have nothing but complete praise and admiration and thanks for Addenbrooke's in Cambridge which looks like it is going to be the nearest to you - but hopefully by now you are well on the way to being sorted - I hope so.

Best wishes
Bec
Bec
Posts: 3
Joined: 21 Jan 2010 13:15

Re: What Next

Post by Bec » 21 Jan 2010 16:43

Martin
I am brand new to this site today and have been reviewing the forum. I hope things have progressed well for you as there have not been any postings for a while. Really helpful list from Nigel - I have nothing but complete praise and admiration and thanks for Addenbrooke's in Cambridge which looks like it is going to be the nearest to you - but hopefully by now you are well on the way to being sorted - I hope so.

Best wishes
Bec
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