Pain in chest on exertion i.e. walking up hills Oxford forum

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Graham

Pain in chest on exertion i.e. walking up hills Oxford forum

Post by Graham » 09 Feb 2012 11:01

Hi All,

I am reposting in correct category.(not CMML)

Attended the Oxford forum where the chair stated, and it was generally accepted at the meeting that a significant proportion of MDS Patients suffer from pains in chest if they put themselves under exertion. Steep hills do it for me even though I consider myself reasonable fit for a sufferer of MDS. I thought it was due to not enough Oxygeneted blood flow around the heart. The pain coincided with the onset of MDS. I left the Oxford Forum feeling reassured.

However my Consultant stated that MDS would not cause these pains. He went on to further state it was due to minor coronary disease which is prevelent in over 65's and a lot of MDS Patients are over 65.

Views please and has anyone else with MDS had these pains and had them checked out. Within the last 18 months I have had two ECG's with no follow up suggested.

Graham
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Pain in chest on exertion i.e. walking up hills Oxford f

Post by chris » 09 Feb 2012 13:14

Hi Graham

Whoops!! Poor Sophie must spend half her life reallocating posts to the correct folders. I also replied to yours and hadn't noticed what folder you had posted in! If others are folowing this thread, see first posts under CMML!

No doubt that there are different pressures in different centres and, although they usually run very late at Addenbrookes, I have to say that I always get plenty of time to ask questions - of which, knowing me, you can guess there are many!!! Poor things - but both the Prof and the consultant there are generous with their time, well-informed and very reassuring. I have been 8 times now and have seen the Prof 6 times and the same consultant twice. From what others have reported, I feel I am very lucky to have this continuity of care. Do you have a clinical nurse specialist at your centre who could respond to your questions if you don't feel you have the time at your appointment? Guess you do as you have said the Haematology centre is very good?

Bear in mind if you do get responses that we all have different tolerances of low blood counts and their effects on our " performance". Glad to hear that your white cells are holding up. Swap you for some reds??!!! (If only!!!).

Might it be sensible to get a thorough "work up" (as they say in the States) to check out your chest pains? If nothing is found, at least that would be reassuring and I think GPs have some financial incentives to do MOTs in the cardiac care area. Is your blood pressure OK? No doubt, that was all checked out at the time of your ECGs. As I understand it, ECGs only identify heart attacks if you are having one at the time!!!

Hope you get some other responses and thanks for your compliment!

Best wishes

Chris
Hi Chris,

Thanks very much for your prompt reply. however I have reposted topic in new folder as I do not suffer from CMML.

Interesting to note your Emergency but G.P's only follow set protocol. The same thing happened to me about 18 months ago. They kept redoing ECG's both the Paramedics and in A & E. The Doctor had called for the Ambulance when I attended the Surgery and I was wired up in the Ambulance. Somehting seemed not quite right but no follow up was instigated. However when they did the blood Test they discovered low blood counts and I was kept in a observation ward. , and after a bone Marrow examination my MDS was diagnosed.

Always interested in what you have to say as you are obviuosly better informed than most of us with regard to MDS.

I will wait upon other replies if any and may go back to my GP. As stated the Consultant did not suggest referring. After listening at the forum to the treatment and follow ups offered at churchill hospital Oxford, it did seem exceptional. We were advised to mention any questions we had at our follow ups in whatever Hospital we attended. Although my Heamatology centre is very good, the weekly clinic does seem fully strtched with only a few minutes allocated per patient. not unusual to see 30 people waitng. (consultant starts looking at watch and I have not finshed all my questions.) Only attend every 4 months and my Red blood cells and platelets are falling, even with injections EPO Blood Cell growth factors. No plan B ever mentioned if these start to fail. (white cells seem to be holding up) Different consultant every time. However the Haematology centre as stated is very good and I can call in with any problems.

If you want to further reply can you post in My Experiences as I will get told off again by Sophie for Posting in incorrect section.

Thanks Graham
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
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