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Attended the Oxford Forum where it seemed to be accepted that a significant proportion of MDS Patients would get pains in chest if put under exertion. Steep Hills do it for me even though I consider myself reasonable fit considering my illness. I thought it was due to not enough oxygeneted blood reaching the heart.
However my Consultant stated that MDS would not cause these pains. He further stated that it was due to minor coronary disease which is prevelent in over 65's. and lot of MDS sufferers are over 65.
Does anyone else suffer these pains and what have you been told?
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- Joined: 01 Dec 2009 21:52
- Location: Essex
That's an interesting discrepancy of views among experts and patients' experiences. The pain attributed to angina is said to be caused by restricted blood supply to the heart when it is under physical stress so it would be reasonable to think that MDS sufferers might also experience the same problem when walking uphill or pushing the limits of the reduced oxygen supply in their bloodstream? In the case of angina, it is due to restricted blood flow in blocked arteries or problems within the heart itself but because of the incidence of heart disease in over 60s, would it not be sensible to have your arteries checked out to see whether they are narrowed and if that is causing the problem? In the absence of any signs of heart disease, I suppose it has to be down to the MDS so maybe you need to pace yourself a bit to avoid the pain?
Anybody else have the same symptoms in the absence of diagnosed heart disease?
I had to laugh reading this though because a little while ago, I was woken up with awful pains in both shoulders and across the top of my chest and it felt a bit lung-related. They were really bad pains and I went into a bit of shock but eventually I went off to sleep again and in the morning - all gone!! Pains in my left shoulder I already knew about as they are caused by nerve referral and are due to my enlarged spleen but both sides was new!!
Next day I rang my GP as I thought maybe I should have an appointment to check out my lungs (as when my CMML originally kicked off, both lungs were filled with fluid, I couldn't breathe and was worried this might be returning). As soon as I mentioned shoulder pains to the receptionist - it all "kicked off", with a GP coming on the phone and telling me to ring an ambulance immediately. NO - I wasn't to come to the surgery or go to A & E some time later but do it NOW!!!! I protested a lot and said I really did not think I had had a heart attack but he more or less said it was more than his job was worth not to advise me to ring an ambulance!! Standard procedure with reports of shoulder pain waking you up apparently!
Anyway, an ambulance was there within 2 minutes, paramedics, blood pressure cuffs, heart rate monitor,lengthy questionnaires, the works! Then into A & E, more tests, ECGs, ultrasound, a particularly nasty arterial blood test taken from the wrist, blood tests and hours and hours waiting around. All came back "normal" with no indication that I had had a heart attack! Discharged with a follow-up appointment for a treadmill test - just to be sure! All normal on that and my cholesterol was 2.8 - scarcely on the scale!
All along I kept saying, look I'm a really healthy person other than this MDS and have never smoked, eat a really good wholefood mainly veggie diet, drink moderately, slim, relatively fit - not really a heart attack candidate!! But I suppose the thing is you never know and I was at least reassured they had done all the tests to back up what I felt.
The other thing is that when you have a disease like MDS you attribute every twinge to some aspect of the disease but, of course, there is the possibility of other diseases coming into play so it is as well to get them checked out - just in case! Your GP should be able to arrange this - though if you mention it while you actually have the chest pains you'll be in an ambulance before you can say "Jack Robinson"!!! I'm also surprised that, after having mentioned this to your consultant and his comment about heart disease, he did not refer you to cardiac team colleagues for a check over? Not very holistic / joined-up sometimes is it?!
Good luck with it all and keep warm if walking out in this bitter weather. I am avoiding too much outdoor stuff at the moment as pavements are very icy and I don't want to test out how bad my platelets are with any bruising (or worse!) if I slip over!!
Sorry- over-long reply and personal taradiddle but hope some of it helpful!!
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.
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