Confused by lack of information from the hospital

[janbev]

Hi my name is Jan, my husband Bev was diagnosed with MDS refractory cytopenia in July 2013. Apart from blood tests he has been told there is no treatment and then only info we have been given are a NHS booklet and a medical alert card. I wonder if any of you can shed any light on the following ‘problems’.
Bev had a heart attack followed by 2 stents in January 2011 and for 3 or 4 months was back to normal, then he started to have pains in his chest, neck and arm muscles which the hospital said was not connected to his heart problem – take a pain killer or 2. The pains continued gradually increasing and May 2012 he had another small heart attack but was told you are fine see your GP about the pains. We went on holiday Sept. 2012 to Crete and after a few days he said he thought he was coming down with flu and why did it have to wait till he was in the hot med. Sun. The next day he was feverish, in severe pain and was admitted to the local hospital then transferred to the main university hospital (we ended up having an extra 7 days holiday). After numerous tests they said he was well enough to go home but as we were leaving the ward a junior doctor stopped us saying there was something terribly wrong with his blood cells and to wait – I listened to his phone call to the consultant but could only pick out that it was his white blood cells that were wrong. We were let go home with reports for the hospital here. Apart from a number of flare ups of the severe muscle pains and a few hospital a&e visits nothing much happened till Feb 2013 when the GP sent him in for investigation into numerous infections that were hard to control and severe stomach problems – at the end of Feb a junior Doctor made a note on a discharge letter saying that given Bev’s neutropenia possibly myelodysplastic syndrome perhaps the GP would refer him to haematology. Our GP did this and also checked all the previous blood tests to see if this had showed up previously and from what he could see there had been indications of neutropenia for around 3 yrs. Since diagnosis in July he has become allergic to penicillin and had a few stays in hospital due to infections – the latest being from Christmas night! This time he has had a cocktail of anti-biotic and is now pain free. It seems to me that when an infection starts the pains start and increase alongside the increase in the infection – At the height of his pains he is on 8 paracetamol and 8 tramadol a day together with oromorph if that is not helping and they only take the edge off the pain. Haematology, cardiology and various abdomen and lung doctors all say the pains are nothing to do with them – of unknown source and get the GP to refer him to someone else.
Sorry to have moaned on a bit – I am now going to note the names of travel insurers as our 2013 holiday cost £300 for 1 weeks insurance – some of the deals shown on this site look absolutely Brill!

[MollyP]

I have pasted Sophie's message for new users here. I suggest you give her a ring ASAP and she will point you in the right direction. She is lovely and very helpful.
My husband probably had MDS for five years before he was diagnosed with it. Looking back at his blood tests they could see a pattern emerging but of course when you have a blood test they only look at the one test.

Best wishes
Moly
Xxxxx


Dear new online MDS forum users,

to receive an information pack, you must contact the main office in London, at King's College Hospital.
This online MDS forum is anonymous and therefore the main office will not have your contact details.

The online forum is there for patient to patient contact and support.
Many users are very well informed about MDS - but the forum is NOT checked for clinical accuracy.

If you do require general information about MDS or need advice - please do contact us first.

We will not know about you unless you email or call us with the following information:
- Surname, First name
- Postal address
- Telephone number
- Email address (if you use one regularly)

It is also extremely important you register with the main office, as we use this information to count how many people we have on our list. This helps us do determine how well our information gets distributed in all of the UK - and how many patients and families we are able to help.
we also use this to have a better idea of numbers of MDS patients in the country - as there is no official registry in the UK so far.
Please help us by contacting us at least once - so we know of you.
If you do not wish to receive emails or newsletters from us - let us know.

Thanks for your cooperation.

We look forward to hear from you.

_________________
Sophie - Patient Liaison
For any queries:
Call 0207 733 7558
Email mds-uk@mds-foundation.org
Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.