I commend you cyclelops for an absolutely excellent posting – if rather scary. Let me say at the start of this post that I fully accept you suffer more than me.


I myself have in the last year developed some of the symptoms you mention and my doctors (if that is what they deserve to be called) have agreed with MY!! suggestion that I may be suffering from some form of autonomic neuropathy now. That is after 15 years of “diagnosed” idiopathic peripheral neuropathy.


As a result of my age (74) and the way I feel generally – which is dreadful – I have decided to take no further steps to seek treatments. That means no further wasted visits to the doctors or consultants in respect of “treatment” for my neuropathies. I will only go to seek pain relief as and when it becomes even worse than it is now. I have been taking Neurontin (present dose 3600mg) for many years now and it doesn't help one little bit. I can't stop it because the withdrawal symptoms would be sheer h--l. I used to take Oxycontin 40mg but I have been able to stop that because it also did nothing for the pain.


I have excruciating foot pain which limits me to walking a few yards at a time – thank God I can drive to the supermarket to get my food, even if it does take forever. My feet are also completely numb and this numbness is now spreading up my legs. I have all 3 coronary arteries partially blocked (I can't take medication as all the drugs make my feet pain even worse). I have ongoing bowel problems and now major urination problems. My balance is dreadful due to my feet feeling as if they are walking or standing on large pebbles and I have so many attacks of cramp in my feet, ankle, legs and hands (usually late in the day and at night).


Bearing in mind all these problems which have totally destroyed my life I have adopted an attitude of – I really don't care any more. I am not asking anyone to feel sorry for me or for any sympathy. It is just the way life is in my part of the world when one has a disease that no one else has heard of. Even my doctor says I am the only patient he has seen with PN in a career of over 10 years!


The National Health Service in the UK along with most of the private sector certainly see only what they want to see.


Do I sound bitter? I guess I do, but what does it matter? I am 74, suffer from an almost unheard of disease and have just about tried everything going in order to help but with no success. I will soldier on for a while but I know now that all forms of neuropathy – in this country anyway – have negligible available treatments. The best one can hope for (unless it is recognised caught and treated right at the beginning) is a modicum of pain relief.


Tony