andy271160 Posted October 23, 2013 Report Share Posted October 23, 2013 My first time on this or any other forum so please forgive the many mistakes I am bound to make.The week before last, after five years of tests and false hope I was diagnosed with Dysautonomia neuropathy, apparently an extremely rare condition with only one or two people in the uk with this condition, my doctor is not familiar with it and can offer no advice and it is another few weeks before I see the specialist neurologist with millions of questions.My main concern is when trying to discover the implications of this desease I keep finding that this is terminal and so I have a need to find out more.If it helps, I had a road accident 5 years ago and over the following weeks/months lost the use of my right side plus a whole range of issues started such as problems swallowing, black stools, uncontrollable whole body sweats, falling down, chest pains, headaches, vision disturbences, shooting pains, burning pains, numbness, supersensitive feet. the list goes on I am now suffering in all extremeties numbness with pins and needles plus severe pain which is slightly manged by huge amounts of morphine, I am confined to my electric wheelchair and bed almost housebound and a touch sad. Wounds do not heal for months, pressure sores becoming more problematic and endless antibiotics to control infections, loss of bladder and bowel control soon to have a suprapubic catheter fitted.Anyone please can you offer some advice perhaps about diet etc that might help.Thanks in advanceAndy (from England) Quote Link to comment Share on other sites More sharing options...
sue1234 Posted October 23, 2013 Report Share Posted October 23, 2013 Welcome! I know this sounds simplistic, but have they thoroughly looked at your brain and spinal cord through MRIs? Quote Link to comment Share on other sites More sharing options...
andy271160 Posted October 23, 2013 Author Report Share Posted October 23, 2013 Thanks for the welcome, Five years ago they did an MRI of my neck only and found severe nerve root compression at c5, c6 and c7 from memory (which isn't that reliable now) I also had a CT scan of the brain at a similar time and several ishcemic changes were noted (they commented that I had a brain of an 80 year old, I was 47 at the time) Other than that due to a young neurologist who put my condition under the heading of functional disorder, any other symptom has been attributed to his initial diagnosis. It is only that I knew my body better than him (as we all do) I insisted in another neurologist and that after five years I finally found myself with a specialist who recognised the signs within an hour, he just knew what questions to ask and to be fair his diagnose fits like a glove. Quote Link to comment Share on other sites More sharing options...
corina Posted October 23, 2013 Report Share Posted October 23, 2013 Hi Andy, welcome to the forum, though I'm sorry you have reason to! Hope you will find answers to your questions and some comfort here. Quote Link to comment Share on other sites More sharing options...
davecom Posted October 23, 2013 Report Share Posted October 23, 2013 Hi Andy,I'm very sorry about the severity of your condition. I want to encourage you to keep seeking answers and treatment. I don't know if "dysautonomia neuropathy" is the same as autonomic neuropathy. If it is, it is certainly not a rare condition (quite common amongst diabetics in fact and of course all of us with POTS). However, the severity of your case and the underlying condition causing it maybe quite rare indeed. I'm sure your doctor knows better than I do. I just wanted to point out that autonomic neuropathy in its self is not rare.Best wishes. I'm sure your daily life must be very difficult. I pray things improve for you. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted October 23, 2013 Report Share Posted October 23, 2013 Hi Andy,welcome to the forum.I'm sorry to hear about your struggles, but I'm hopefull that we'll be able to help you find some answers and perhaps cope better with your condition.As Dave said above, I'm not sure what you mean by "dysautonomia neuropathy", perhaps you can clarify that for us. If what you have in mind is autonomic neuropathy/ganglionopathy, that is indeed a less common condition, but a treatable one. There are many articles/resources on it and I've posted a lot of them in the past. Also, the fact that you mention that your wounds take a lot of time to heal, makes me think blood sugar related issues. Have you ever been tested for diabetes? Best of luck with your upcoming neurologist appointment and fingers crossed s/he'll be able to point you in the right direction.Alex Quote Link to comment Share on other sites More sharing options...
andy271160 Posted October 24, 2013 Author Report Share Posted October 24, 2013 Thanks Dave and AlexDysautonomia neuropathy is not the same as autonomic neuropathy, I wish it was. My Doctor has no idea what it entails and I am trying hard to gain info. The specialist Neurologist even told me he would have to re-study the condition prior to our next appointment because it is so rare, he has only ever been aware of a max of two cases in the UK. I have been reading lots of stuff on this forum and get a general feel that I should be drinking lots of liquid which I do (several pints of squash every day) plus a high salt diet, which I also do but in all fairness I need as much help as I can get untill my next appointment when I hope all my questions will be answered or at least some of them.I have got to say to all of you how much I appreciate you responding to me, I have become quite withdrawn and seldom leave my house so I have no social contact so thanks to you all..I have been through the dietbetis tests but all ok.I will share any news I getAndy Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted October 24, 2013 Report Share Posted October 24, 2013 Andy,I admit I never heard of "dysautonomia neuropathy" despite reading several hundreds of dysautonomia related research. Any chance you can tell us a bit more about your diagnosis? Eventually point us to some web pages with more info? Perhaps we can include those on dinet's main page under "research", or even make a mentioning in the newsletter in order to raise more awareness.Alex Quote Link to comment Share on other sites More sharing options...
andy271160 Posted October 24, 2013 Author Report Share Posted October 24, 2013 Hi AlexAt the moment I am limited to the words from the specialist neurologist and the diagnosis printed on the request form for the specialised blood tests that were carried out.When I have tried to learn more from the internet I must admit I seem to find my searches lead to 'almost' matches but not 'exact' matches, this forum's title is about as close as i have managed to get.The neurologist did labour the point about how rare it is and that it is incurable, progressive and terminal with no life expectancy available as death can occur at any time without warning, so I am absolutely in limbo, my poor wife who already cares for me 24/7 is now saddled with this latest news and is being so strong, we have spoken about my funeral and sorted out some 'no questions asked' insurance plus my will, I am only 52 and this is all happening a bit quick.All of the local support structures seem to have been notified and I am getting daily visits from various medical providers and several hospital appointents have suddenly been re-scheduled on an emergency basis. I do wonder if I am the only one who does not know what is going on.I am constructing a growing list of questions for my next appointment with my neurologist and will of course let you know every detail i can extract.I get the impression that almost all you experienced members live in the states and you seem to enjoy a relationship with your medical providers that simply does not happen in the uk, we are trained not to question the doctors as they know what they are doing and us simpletons should not seek to challenge anything we are told.When I read a lot of the posts on here it seems that POTS is the norm from which I had never heard of before.Anyway as promised I will post every bit of info I get from the powers that be in the hope that some of it might be recognised or of help to the alledged 350 people in the USA with the same diagnosis.So thanks again for the interst Alex.Andy Quote Link to comment Share on other sites More sharing options...
Katybug Posted October 24, 2013 Report Share Posted October 24, 2013 I don't know anything specific regarding your condition. However, I know I have read in my many hours of research that traumatic injury can cause certain forms of dysautonomia. Based on your original post, I'm wondering if that is the origin of your particular issue. I'm so sorry that you and your wife are having to deal with this at such a young age. We are here to help if by no other way than to support you. I know it's hard to deal with the docs, but, please ask them everything you can think of. It's your body and you have a right to know everything that they do. Take care. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted October 24, 2013 Report Share Posted October 24, 2013 Andy,indeed most of the members of the forum can better relate to POTS, but there are so many other conditions that affect the ANS, and yes, some are more common than others, but that's not the point here. The point is we are here for you to support you in any way we can. As far as the doctors are concerned - I had experience with doctors in several countries and I've learned that they are all human and can make mistakes. Particularly with a rare diagnosis. I'd say that asking your specialist as many questions as you can, and challenging his thinking/approach should be a reasonable and understandable attitude - it may not be the "cultural" norm in the UK, but it's your body and your health that you're talking about and I'd say you have nothing to lose by being more assertive, in fact you may have a lot to gain.You seem to be between a rock and a hard place, but I'd say that looking for more answers to your questions and even for a second opinion is the reasonable thing to do in your situation. Hang in there, and remember that we're here for you. Alex Quote Link to comment Share on other sites More sharing options...
Tachy Phlegming Posted October 24, 2013 Report Share Posted October 24, 2013 You got the morphine after you had almost all of these symptoms right? Quote Link to comment Share on other sites More sharing options...
davecom Posted October 25, 2013 Report Share Posted October 25, 2013 Hi Andy,My understanding is that one of the top autonomic doctors in the UK is Professor Christopher Mathias. I'm sure it's hard to get an appointment with him, but given the severity of your situation, I imagine exceptions may be possible. If I were you I would immediately try to make appointments with all the top doctors in the country. Especially since the appointments may take so long to actually happen. I know that several members of this forum have seen Professor Mathias. It is my belief that the more rare your condition, the more specialized and respected the doctor you should see.David Quote Link to comment Share on other sites More sharing options...
andy271160 Posted October 27, 2013 Author Report Share Posted October 27, 2013 I have been trying to respond to the helpful posts here but my answers seem to disapear!!!I guess this one will not get posted either but here goes. fingers crossed Quote Link to comment Share on other sites More sharing options...
corina Posted October 27, 2013 Report Share Posted October 27, 2013 Just so that you know it isn't you Andy, the forum had some glitches over the past few days. It seems we're back to normal now! Quote Link to comment Share on other sites More sharing options...
andy271160 Posted October 27, 2013 Author Report Share Posted October 27, 2013 Thanks CorinaBeing as memory problems are one of my specialities I thought I might have just thought I had made some posts but you have restored my sanity.ThanksAndy Quote Link to comment Share on other sites More sharing options...
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