Living with Neuropathy - Welcome to the group

Hi,
Today I had my suspicions confirm. I do indeed have Autonomic polyneuropathy and FND which are well advanced. I have CKD stage 3b diabetes T2, high blood pressure and severe IBS. There are other incidentals, to me at least.
It has taken 14 years of searching and prodding to get to today's confirmation. Mixed feelings with a diagnosis I had wished never to hear but relieved I now know. I will deal with it in my typical fashion. Push the body to extremes so I don't have the time to worry about it. Right now, I want to cry but then the reality is I'd sooner be happy I know what plagues me. I kind of feel deflated, the fight for the truth is over, what next.
So, I'm terminal, incurable and untreatable. Because I seem to know more about this than the specialists about me, I have had to confront them with my suspicions and ask, yes or no. I have always though I was right and have delt with the consequences. I understand none of them wished to bring up the topic so I do, knowing it would break the ice. Then we can talk about it without having to worry about upsetting me. It effects my whole body now and is crippling me. It spikes my glucose levels, play with my BP is causing a lot of damage to the body and organs and chooses when to be narky and give me the run around. I'm no longer in control, if I ever was! The upside is it has deleted the surface nerve sensors so mostly pain doesn't affect me. That with my high pain threshold and I only feel really deep penetrating sharp objects. Over the last year it has crept up my legs to the knees leaving me with no tactile sense and always feeling like I'm standing in air.
My routine is now clear the bowel by whatever means possible but do not strain. Occasionally the muscles forget they are playing sill buggers and work, otherwise it is suppositories every 4 days. So, day 1 a small amount of food and fluid. Day two and three mostly fluids as I'm stacking the stomach now. If it hasn't moved by the end of day four it is suppository. Then repeat the cycle, along the way maximum number of laxatives are sprinkled, but mostly ineffective as they are log jambed and can't get to the lower stomach to do their job. This is my life now with a limit on the amount I can ingest as it compounds on me but only once the stomach will accept it as so many foods it will kick back on. No fruit or vegetables but some only cooked like peas carrot or Brussel sprouts. I can eat one sandwich and 4 cups of tea a day maximum, or I can have eggs anyway I like or possibly a little bit of chicken. All have to come with in the strict volume measure or trouble.
The only question left which nobody can possibly answer is how long. I struggle to believe I will see Christmas this year but then who knows, my crystal balls don't work either. One thing for sure the brain is unwilling to roll over and play dead for the moment. For those wondering how I do it. I do it because I only know one alternative, death. So, I do it because I don't like the alternative.
That's my wonderful news for today and how it affects me, mission accomplished on to the next challenge!
Cheers

@cheyne thank you!
I’m a natural fast walker. I was raised near New York City. If you don’t walk quickly, there you can get pushed, and run over.
I moved from there 40 years ago and still I walk fast.
Now, if I am on a level floor, I can zoom by everyone using my walker. If I try and slow down, I tip over…
When I walk around the house I typically don’t use a cane or walker unless I am feeling really “off”, or I need to bend forward. Forward movement causes me to lean backwards.

Thanks for sharing with me. You’re first person with FND I’ve had the chance to talk with..

@arcuri24 history! I love most of it especially when I can, using DNA and WIKITREE and Ancestry.com trace my ancestors to places far and wide.
The Scots-Irish in the Appalachian Mountains, the founders of Virginia, and places south. I am a descendant of the original settlers in New England, New Amsterdam, and Long Island, NY
Found out my parents are distant cousins via the New York side and the Florida side. Crazy.
Learning migration paths, the whys and what nots answers a lot of questions.
European dynasties too.

I’ve been working on my family tree for almost 15 years.
It keeps me out of trouble!

@SusanEllen66
Hi,
You are more than welcome. Any time I'm more than happy to share info. I only happened on FND by chance when I read an article from Australia of a young woman who had been branded with the psychological label. What a lot of us are accused of through ignorance. She was getting long periods of temporary paralysis which rang a bell with my short-term bouts of paralysis. I had known for a few years about the autonomic polyneuropathy although no one had bothered to confirm it. Now looking back trying to find the trigger that may have started this issue the information has been a revelation. It is obvious the poisoning of Michigan state with PBB is likely my trigger. Exactly when the FND may have started is more difficult to define with several major incidents over the years that have targeted the brain. I'm picking 15 TIA's over 3 days the likely cause. Anyway, the pair gang up on me now making life as difficult as they can because they can. I seem to spend an enormous amount of time researching the subjects using AI as the index to a medical library I don't have the use of. I thought knowing would be the end of my research but no it isn't. I need to know how it is likely to end my days, so I have some tangible idea when it starts in earnest. At least spending the time in research takes the mind away from my reality, so I plug on.
Take care.
Cheers

@SusanEllen66
You are one of the originals! My roots here do not go as far back. My brother has done some work on our ancestry. Both of my parents passed away when I was a teenager so I never had the chance to ask them about our roots. My mother's parents both died when she was a teen as well. All roots go back to Italy and what was then Yugoslavia. I really believe that my celiac disease/neuropathy might be traced back to the trauma of losing my family so early in life. You mentioned European dynasties--does that mean royalty?

Anyway, I am taking a page out of your book and trying to involve myself in anything that distracts me from my leg issue. I am now focused on de-cluttering but hope to get more creative down the road.

Hi,
What to "look forward to"with autonomic polyneuropathy apart from the obvious!
Considerable lag with intructions for the brain to the limbs. I likely will become my age and not fire off at breakneck speed as I do presently! The heart is wired independantly and should not suffer like the limbs. That of course is dependant on FND behaving itself. How long this could last in the big question. Eventually movement will become severely restricted to finally the brain restricts everything to preserve itself. I have witnessed this type/ style of death first hand and it is usually painless, increadable to see but not something I ever wanted to witness. Finally the organs shuts down followed closely with the brain as it is unable to sustain function.
How long does this take, I'm not sure as this is the unknown quantity. But rest assured I will be cognetive for a while longer. The aim is to now try and stretch the duration out as long as possible using every tool in the tool bag to gain every second of life. Shame on me if I sqaunder any time.
I don't know why I have made choices along the way that have set us up close to the regular shops we need, Doctors, chemists and food, all within easy reach. Did my chystal balls really work, perhaps not, likely just a coincidence. I have already purchased the equipment I felt I would need going forward and am now realising just how fortuitive those choices have been. Last thing to organise is a threshold ramp for the electric wheelchair, somthing I will need to build as it is an unusually high step for a retirement unit. Forgive the spelling and grammer, the fingers have trouble keeping up with the brain that is racing ahead egar to get as much accomplished in the days ahead as possible. I guess one of the first signs of the degradation with the nerves like the feet. I don't know if this is from diabetes or autonomic polyneuropathy, but it is what it is just another hurdle to work around.
I have the dubious pleasure of being the first patient with so many health issues and the most advanced autonomic polyneuropathy that the hospital has ever seen. Does this mean I will get the help I think I should or will it be the shoulder shrug and blank look. Time will tell.
Cheers

@arcuri24 stress is the bugaboo of my life too. I didn’t lose my family until much later. However, even when they were here they caused us lots of stress.
I believe birth trama is the cause of my physical problems.

Italy, Yugoslavia, Istra? My brother-in-law was born in Yugoslavia (Croatia). His family escaped under cover of night in 1965, and went to Italy. Then they emigrated to the USA
Originals? Funny yes.
Royalty: Plantagenet, Hapsburg, Tudor, Stewart…direct ancestor, Queen Philippa (Hainaut) Hainault 1314-1369
Is my 22 great-grandmother.

If you decide to go further with your family tree, start with who you know (obviously). Look on Wikitree (free) see what you can find.

@SusanEllen66 I descend from the Puritan founders of the Massachusetts Bay Colony, Roxbury, MA, now a suburb of Boston. Captain John Johnson, my 10x Great-Grandfather, came over in 1630 with a large group financed by Lady Arabella Fiennes, in the same group John Winthrop' arrived with. Captain John Johnson was the Constable of Roxbury and in charge of the arms, ammunition, gunpowder and jail. Many prominent people descended from him including Franklin Roosevelt (FDR). My Johnson ancestors fought on about every war, including the French and Idian, the American Revolution, the War of 1812, and the Civil War (on the side of the Union. I also unfortunately suffer from neuropathy. Welcome to the group! Photo below, Capt. John Johnson, Constable (left) with John Winthrop, founder and Governor of the Massachussetts Bay Colony.

Hey name is Mike and I am sure u had the same comments written in every single person… I have severe diabetic neuropathy in my feet and hands and they are just getting worse, so bad that it I don’t want to open my eyes anymore when I do go to sleep. It amazes me there is no solution in the times we live in when medical research is so sophisticated… or they do and don’t want us to know . Who knows but it’s getting very hard to go on ….. but I am trying and hoping every day for a miracle… god bless to all who feel the same

I'm in the same boat. Just gets worse and worse and I , too, cannot believe there isn't anything that can help, or even give much pain relief other than Lyrica, Gabapentin, and one or two others. And, ya, sleep is a bear now. A lot of snake oil, and people getting rich but nothing to help in this day and age???!