Fed up not knowing what is wrong!!

[neebs05]

May I begin by apologising because this is going to take quite a bit of reading!!
I am a 60 year old male. I do not drink or smoke (never have done) and have kept fit and played  football, most of my life, up until about ten years ago. When I was younger I played semi-professionally.
I suffered from pulmonary sarcoidosis about 25 years ago, and was very ill with it. It affected my whole body. I was given steroids and was taking them for a couple of years.
Ten years ago I was taken to hospital with a clot on the lung. I was treated with warfarin in hospital and for some time afterwards. The warfarin was then stopped. I then began taking 'turns'. The symptoms of these 'turns' when they first began were . . a severe pain in my left thigh which then moved to the big vein in the left side of my neck, I could feel it going over the top of my head, then it would go down the right side of my face, my face would go numb, and then it went down my right side into the middle of my chest and then it would disappear. I would also feel as if I wasn't getting enough oxygen. The veins would disappear from my hands and I really felt as if I was dying. I was in and out of hospital over a period of years, having various tests, but no-one has been able to find out what is wrong with me. These tests included a lot of heart related things and they've always said there's definitely nothing wrong with it and that I was very fit.
At one visit to an out of hours doctor at the hospital, she told me to start taking aspirin. I began by taking 75mgs but was still taking the 'turns' so I was told, by my own doctor, to put it up to 150mgs. The 'turns' continued, so I took 300mgs aspirin. The 'turns' more or less stopped. I was on this dose of aspirin for years and it really helped.
I went into hospital in October 2006 to have a full knee replacement on my left leg. When I got home from hospital after the operation, I had to inject myself with minihep for 6 weeks and also take 150mgs aspirin.
(I have been put through rigorous tests, all of which have shown nothing. I was even sent to Aberdeen for a brain scan and a lumbar puncture, in case it was something from the sarcoidosis that was causing my problems, but nothing showed up).
I then managed to cut the aspirin down to 75mgs and it seemed to keep the 'turns' under control. If, on a certain day, I felt as if there was a turn coming on, I took another aspirin, and within a couple of hours I felt ok again. Occasionally, if I'd forgotten to take the aspirin and I began to feel really ill, I'd take the aspirin. After a while it was as if I could feel the blood begin to surge up my legs.
I had been feeling better than I'd done in a long time when, last year, a doctor at my practice (not my usual doc), decided  to take me off the aspirin and put me on an aspirin substitute. Within a few days, I started taking the 'turns' again and ended up at A and E on three occasions. Tests were done but nothing untoward was found.
Unfortunately I had to go back to the same doctor and he took me off the aspirin substitute completely.
A couple of days later my wife had to phone for an ambulance as I felt so ill. I had taken an aspirin before the paramedics arrived and they then told me to take another one when they were with me. They discovered my BP was high and when they put me on the ECG machine they said I had AF . They took me to hospital where I was given the usual checks but I discovered that, although the paramedics had told the nurse in charge about the AF, she did not pass on the information to the doctor.
I was discharged and told to visit my own doctor. This I did and he arranged for me to be fitted with a 24 hour heart monitor. The results of this showed that my heart was slowing down, at times to 55.
I have been taking my BP at home for some time, on the instructions of my doctor, as my BP has been very erratic for the last number of months. (Prior to this my BP was fine). When I do this at home, my heart beat sometimes falls as low as 45.
I was thinking that it was a clotting problem but the medics do not think so.
No-one seems to be able to find out why the aspirin helps.
I am waiting to go for a chest X-ray but do not know what else the doctor is thinking of doing.
I really would appreciate any suggestions as I'm extremely fed up with this now . .that's actually a bit of an understatememt!

[neebs05]

Thanks for your input.

[Dr. Kokil Mathur]

Hi
Welcome to the MedHelp forum!
Bradycardia or low pulse rate can be dangerous especially if it due to a failing heart, arrhythmia, degenerative myopathy, heart attack, or due to a valve disease. Non cardiac causes can be hypothyroidism, electrolyte imbalance, prolonged bed rest, and autoimmune disease. If you have a resting heart rate of 50 or below, please get this checked ASAP, by a cardiologist. You probably have severe atherosclerosis and that is why aspirin is helping by keeping the blood thin. Take care!

[kaylamae221]

Just keep doctoring! Be sure your doctor is aware of everything you have explained and if he can't give you any answers ask him to refer you to someone who can! Sometimes it takes several do tors to come up with the right diagnosis! Just don't give up!