andy271160

Morning TCP Whooooooops I have got it all wrong its not lidocaine I should have been talking about its capsicum !!!!!!!!!!!! SORRY totally got confused, I know you will understand. So as far as your original question your right it is used as a local anaesthetic, which sort of presents an interesting point insofar as when you use IV then you are subjecting the whole body to the drug which is known as a LOCAL pain killer, let us know when you know please. Thanks and sorry for the alarm, Andy

Hi TCP Lidocaine by IV, WOW I have never heard anything like it, is there a chance someone is teasing you?? The reason it sounds so far out is that I am down for lidocaine treatment through the pain clinic in Doncaster. As I understand it they use lidocaine at 8000 times normal strength to chemically destroy the nerves in an effort to reduce pain that normal methods such as opioids cannot resolve. Where the IV comes into it is the treatment is EXTREMELY painful and so they pump morphine into you through an IV line. This is a serious procedure with many hazards for the patient and the doctors. I would check to see what exactly you are about to receive Andy

Hi MedicGirl Thanks for the question, Reading my post back I can see that whilst my intention was to put peoples mind's at rest what I have actually done is to appear as if I could diagnose medical issues which I simply cannot, what I was trying to get across was that everyone here has some common and some individual diagnosis, but there is a common thread, however I have a combination of symptoms often similar to many other people but I also have a number of specific symptoms that non of you seem to have, it was this combination of symptoms along with years of tests that finally gave my diagnosis. I can see that you are interested in that list of specific symptoms/test results which led to my prognosis, On one level I should list it out so others can relate to it, However as I am sure you will understand that if I or anyone said "this symptom plus that symptom plus that test result = fatal desease" then I would scare the **** out of so many people and cause so much distress to them and their families, some whom are already vulnerable, it would a lot of harm and no good, so please accept that I am, in good conscience not wishing to hurt anyone. My god I sound so patronising which I am not, Do you understand?? On a more IMPORTANT point I see the latest diagnosis you have regarding cancer and I do offer my heartfelt best wishes, my wife is going through cancer and I can relate to a few of the many feelings you must be bearing, I do understand the grading system. Best wishes Andy

Accidently found this post and while it is certainly true that the huge majority of Dysautonomia are not life limiting (in years) I am one of the very few who fall under the catergory of 'having a chronic, progressive, generalized form of dysautonomia in the setting of central nervous system degeneration, leading to a generally poor long-term prognosis' Life expectancy is an average of 7.9 years fron onset of symptoms, I feel let down that it has taken the specialists 5.5 years to finally diagnose it!!! Most of the last few years were wasted with them trying to get me to accept it was a functional disorder (in the mind) So anyone with any doubt push and push harder for a full and substantive diagnosis. I do recognise in all the posts I have read a huge difference in symptoms and whilst we share several, some key significant ones seperate the 'lucky' one from the very FEW others. Not seeking to cause alarm more to re-assure eveyone that the poor prognosis in wikipedia is extremely rare only one other case known of in the uk. Andy

Whilst I am constantly getting tingling pains like when your hand goes to sleep and then wakes up, I know what is causing mine. But as a general caution the way you have described your symptoms indicates a rather rapid visit to your doctor or hospital. DO IT NOW. just to be safe oh and take an aspirin NOW. Dont mean to be alarmist but you are desribing one of the common warning signs of a poss heart problem. It usually is innocent but I would not take the chance. Wishing you the best Andy

THANKS for your thoughts Faintinggoat, as luck would have it my body seems to have got used to not sleeping at all so guess what ive been up all night. looking forward to tonite to try again. Andy

After many months of no sleep due to repeated visits to the loo (every 45 min from bed time till 6.00am) I finally got this bit of kit 'installed' this afternoon, all done under a local. There is a rare feature of dysautonomia that causes your kidneys to hold urine production whilst upright and only produce when lying down and then its almost non-stop. My wife and I are looking forward to a nights sleep.........please be tonight..... please. Any other blokes with similar or does it also affect ladies?? All the best Andy

Hi Rachel I recognise a lot of the symptoms you are describing, I have aframe in my bed to stop the sheets touching my leggs and particularly my feet, my feet and legs go blue/black/purple, I am confined to a wheelchair and am unable to stand at all, I had vocal issues. For over five years my symptoms have progressed and it seemed as if when one faded another two took its place, the neurologists labelled me with functional disorder and was on the point of admitting me in to a 6 month hospital stay to re-programme my brain. I always knew they were wrong and by luck I got in front of a specialist. within an hour of talking and testing he declared a final diagnosis which may be pertinant to your son. Look up Dysautonomia small fibre axonal periferal neuropathy. Be careful that you identify the specific traits of your sons condition because there are several forms this can develp, Do not scare yourself because some people have confused some symptoms and reached a prognosis that is not warranted, have a look and chat with your people, it is hugely rare with only 1 or 2 people in the UK with it. Good luck. Andy

Hi I had a MRI scan on my neck early on in my journey, it disclosed severe nerve root compression plus bony outgrowths along with degenerative desease. I also had a CT scab of the brain a few weeks later which disclosed numerous ischemic changes, the specialist said I had a brain typical of a 80 year old, I was only 47 at the time. Nothing much happened with the results like so many other tests we all go through. I hope this helps with your theory Andy

Hello Gemma I suspect the end of the first line of your post is a really good point. For what it is worth, I have spent over five years seeking a finite diagnosis, only to discover when I got it that it carries a terminal prognosis with life expectancy of just under 8 years from inception of symptoms. So am I glad i spent that time seeking knowledge?? its a tough one. In the end life is for living and if you have anything better to do than sit in a hospital waiting room then I would do it. Apologies if that is a bit blunt I guess I am telling myself off, but it might be worth a pause for thought on your side. I really do hope that whatever you decide, it works out well for you. Take all the care in the world Andy

Hi Galatea Not having POT'S myself as far as I know. But diagnosed with dysautonomia neuropathy which bears some relation i think. Plus being new to all this I would of course be interested inmeeting people in the same/similar boat as me. I live in Leeds and rely on my wife to drive me everywhere as I am confined to a wheelchair. My specialist tells me that I am only one of two people in the UK that have the desease I am blessed with so of course I would love to meet up and compare notes/coffee/etc with anyone who has a clue what we are all going through and how isolated we can become. Let me know if anything develops Andy

Thanks Corina Big day today went well, the urologist flustered on a bit and made me think that more months of delay were about to be put in front of me but then he said that we can do this suprapubic catheter procedure within the next few days, i have watched a video showing how they insert the catheter through the lower tummy just above the pubic bone and straight into the bladder, it looks ok and they do it under a local so straight in and out same day. My wife and i are hoping that we will get a nights sleep without the normal ten visits to the loo each night. Cant wait for the op a nights sleep is long overdue and it is bound to help us cope a bit better day to day. my neurologist is Dr M Boix at pinderfields hospital west yorkshire and he is a specialist in the area of dysautonomia neuropathy although I have only seen him once but now i have found him i trust he will become a regular feature for the near future. Andy

Big decision in the morning for me. I have an appointment with the urology department in Wakefield, West Yorkshire to make arrangements for fitting suprapubic catheter, hoping it will stop the 10 times a night I need to wee which when you cannot stand or walk means a lot of help from my georgeous wife. We might find out what an hours sleep is like, it has been a long time. Andy

Thank you Rachel Your words are very kind, I suspect your experience in life helps you say very sensible and caring words, it is only three weeks since i have got a formal diagnosis (dysautonomia axonal small fiber neuropathy) alledgedly extremely rare with only one other person in the uk with it. It has taken five years of being dragged through the system by a half hearted neurologist who was **** bent on having me admitted into a six month program for phsycological re-programming. If it wasn't for the fact that the current diagnosis is terminal I would be over the moon. My wife has been my world and continues to be my life, we are facing this together and have sorted out all the nasty stuff like my funeral etc so we are free to enjoy every moment (except of course all the hospital appointments) Tommorrow we see the urologist who will be doing the procedure so i will try and get all the answers i need. Thanks for your mention of infection. I will of course let you know how things go. Thanks again, take care of each other. Andy

There must be something wrong with me because I suffer from total body sweats that can last for 10-12 hours, it can happen whilst sleeping, in a cool room, or even when I eat. The volume of sweat is so great that I often go for 10 days without passing any urine. Its not nice. Andy