At long last I have been able to post a full history of my circumstances which might help everyone understand my thought process however odd it may sound..
July 2018, I was a fit healthy 64 year old man, slightly overweight but active and played competitive table tennis.
August/Sept 2018. I started to get near fainting bouts, and eventually was asked to wear a 24 ECG monitor, this discovered my heart was stopping for 9 seconds at a time, this was treated urgently with the fitting of a permanent pacemaker.
To say I was shocked was an understatement anyway they carried out a load of tests on my heart even an MRI ( although that didn’t take place until December due to having to wait until the PM leads had bedded in as they can heat up during an MRI)
Not surprisingly I wanted to know ‘how did that happen’ their only explanation was it was a age thing but did acknowledge I was young for that, all the tests they subsequently carried our showed no issue with my heart and left them a bit puzzled I think.
I looked at options as to why you might get ‘heart block’ (the technical term for my heart stopping)
On examination there weren’t many options the main reasons was due to heart attack or heart disease neither of which I had, the issue was an electrical interruption from my SA Node to my Av node ( sorry to be detailed ) this function is controlled by your autonomic nervous system with signals coming from the spinal cord presumably.
However I found a statement that said heart block could be caused by a cancer in your body ( so that was the start )
During Oct 2018 I started to get high up back pain on the left hand side of my chest and lost half a stone in weight quite quickly so I saw a private GP who order a CT scan of my abdomen which included some of my spine as a matter of course ( it was a CT as although I have an MRI compatible PM you need to have cardiac input at the time you have the MRI and no one I knew at the time did that privately ( more about that later )
The results from the CT detailed all my organs but didn’t detect anything sinister, however it also reported a degeneration in my spine and reported a ‘bone’ island in my Lumbar spine which was reported as accepted as benign.
Thig settled down and I thought all was well and with no other reason for my heart block being identified accepted it must be one of those things.
September 2019, I started to pee almost constantly no sooner had I had one and needed another one, this was accompanied by low back ache, I went to see my urologist who did a PSA which came back as 0.7 ( all previous Psa test, were in the region of 1.5 to 1.9 over previous years, so it was a very different result but I thought better to be that way than higher. Dre was done and reported as ‘normal’
I was pretty low with the back pain so to try and give me some confidence I re read the previous CT scan and picked up on the bine island comment and worried that just maybe it wasn’t as benign as they had thought, so I requested a further CT scan of my spine to see if anything had changed, this CT reported that in fact the bine island remained the same as did a lung nodule picked up previously, however as this was a more detailed spine scan it identified degeneration in all of my spine, Cervical, Thoracic and Lumbar with disc narrowing at all levels, so I accepted the pain must be due to that, the peeing episodes had stopped, or at least gone back to what was normal for me, albeit, nightly trips to the loo low flow, and quite frequent peeing etc
After that all was fine from what I can remember the back ache subsided eventually and I as going along ok.
Then just after xmas I started to get some odd sensation in my right thigh just like stiff muscle although hadn’t pulled it, in fact all last year I played TT every week, without issues, so I was rubbing the muscle with Voltarol to try and easy the stiffness.
Then on the night of 12th of JN I was awakened by the most excruciating pain in my right thigh and hip, so much so I had o get out of bed and go downstairs, I eventually did go back to bed but found it hard to sleep.
Next day went to my GP as the pain continued to get strong painkillers, GP diagnosed bursitis, I had never heard of it but accepted that was a possibility, she suggested getting some Physio.
My leg was so weak and painful I had to lift it into the car and couldn’t walk upstairs normally as couldn’t lift that leg up the full height so had to go up one step at a time.
The Physio who I saw the same week didn’t some exercises but could see I just couldn’t walk properly, anyway the next week she used needles ( Acupuncture ) which released the spasmed muscle ( at least I that’s what happened ) immediately I could use the leg better but it was very painful still and I still couldn’t walk properly.
I went back to the GP who watched my walking and was puzzled and ordered an MRI on the NHS, however due to my PM they wouldn’t automatically sanction an MRI without be seeing a Muscle and Skeleton specialist which I did , he did some tests and I had hoped it was going to be a trapped nerve, it certainly felt like that from the start, anyway he didn’t think it was but didn’t know what it might be. So he ordered an MRI without contrast on my lumbar spine only, although ( I haven’t mentioned this here before the pain I was getting was now also in my middle and upper back, so I would have liked an MRI for all of it, but it wasn’t to be .
I was very keen to have an MRI as during all this I got to necking how good a CT scan was for picking up Bone Mets and to my horror found that when using a CT, with some one of my age its was easy to misinterprets spine degeneration with Prostate cancer in the spine as the delineation is not easy to see, and as most men are in their 602’ do have spine degeneration its also when they may have Bone mets, but obviously none of that was expected so that’s not what they would even consider.
I had forgot to mention that since the very painful night, my urination changed completely in as much I no longer have to get up in the night to go and I go less frequently during the day, I feel I have lost sensation in my groin area, also I now have severe ED which I had before but much milder, also I have lost sensation in my right leg which is a lot weaker than the left and looks like lost muscle in that leg, and my walking is much more deliberate not ‘natural ‘as before.
The pain continues all down my right hand side of my body and middle which is worse when lying down buy much better when moving around.
All the above symptoms can be found for advanced prostate cancer, in the meantime my PSa which was also done in Jan again was 1.
On a positive note the MRI of my lumbar spine didn’t show anything and no malignancy, which is a good sign.
However as you now know that latest blood has further showed an increase in Ferritin which is a worry, as my back oai continues as does all the symptoms mention in the last few paragraphs.
So whilst you point is well made that I am focusing on Pca its possible it might be something else, but in asking the question I have about the ferritin to those in the group may help if someone had the a similar experience.
Clearly whilst I have tied all this together right from the PM issue that may well be just a coincidence, as I can find no one in the whole world that has reported getting a PM and Pca together but I may not have made this clear my thinking was that if I had a tumour of bone hardening pressing on my spinal cord could that have interrupted the signal to my SA node to cause my heart block, to add to that given my Lumbar spine MRI was 'clear' I have considered whether the leg spasm was caused by an interruption within in my nervous system again from an issue in my upper back not my lumbar region, my thinking is I have seen one part of your of nervous system tightens muscles the and another releases the muscle, so my pain although I thought was a nerve trapped the pain was so bad, may have been a cramp type pain that lasted until the physio released it manually and the following few weeks it took for the pain to subside. ( that last bit sound a bit far out but I have no idea what the spinal cord does in relation to sending the signals to other parts of the body but clearly it does carry out that function. At odds with that however is that whilst the hip is still stiff and painful to walk I am thankful no such spasm has taken place since.
If you have got this far thanks for reading.