I`m new here and already confused. About a year ago I was diagnosed with autonomic neuropahty that`s what at least the papers say. I`ve had diabetes T1 for about 20 years and I think it`s possible for me to have this disease, but I feel like I`m too young for it. I know it`s probably because of my reckless teenager years, when I wasn`t exactly controlling my BG, but I`m scared shitless and wanted to ask you if there`s any possibility it might be something else? Or if at least I have chance to live a long life? I know it was stupid of me to act so careless, but my HbA1c never got beyond 9,5. I feel like I`ve ruined everything.
They`ve diagnosed me because my pressure falls when I`m standing and I got this dizziness, when standing up very fast, but I`ve been having this since I was about 18. My doctor told me that it`s very mild right now and the only symptoms I can get at this point is feeling my drops of BG slightly less. I`m getting paranoid because I can`t get to fall asleep if my BG is <100. Sometimes I think that my doctor just lied to me about this disease so I could open my eyes and see what I`ve been doing to myself, but in reality I`m not sure. My last HbA1c was 8,1. I know it`s still very high but I`m getting to lower it with small steps. I`m no longer a carbohydrate junkie I prefer proteins and vegs, but still get crawings. I don`t know what to do. Please tell is it possible I might have been diagnosed wrongly?
Autonomic neuropathy is a group of symptoms that occur when there is damage to the nerves that manage every day body functions such as blood pressure, heart rate, sweating, bowel and bladder emptying, and digestion.
Autonomic neuropathy is a group of symptoms, not a specific disease. There are many causes.
Autonomic neuropathy involves damage to the nerves that carry information from the brain and spinal cord to the heart, bladder, intestines, sweat glands, pupils, and blood vessels.
I myself have severe diabetic peripheral neuropathy and am in constant pain 24/7; I've taken Hydrocodone, Methadone, Tramadol and Pamelor - all to no avail. I use the Lidoderm Lidocaine pain patches, but they also do not help. I don't what to tell you; except Good Luck with your treatment.
Unfortunately, you are unlucky enough to have the beginnings of Diabetic Neuropathy at such a young age. I really feel sorry for you regarding that. I have had diabetes for 37 going on 38 years and didn't have a clue about neuropathy until the past 5 or so years.
Most times I can get a handle on things by being stricter with my blood glucose levels, but this is not always the case. Any illness or infection (both of which are aggravated with/by diabetes) makes the neuropathy act up as well. Pain killers seldom really help all that much. The one that seemed to help the most was Lyrica directly given for neuropathy, but that made all other pain killers really strong, meaning it doubled or tripled the 'drugged' feeling of the pain killers, without really helping the pain. It did however, stop that darned burning which is really difficult to tolerate.
P.S. It NEVER hurts to get 2nd or 3rd opinions, and if you ask your Dr he/she may recommend someone or better yet, call your insurance company and ask them how to proceed to get a 2nd diagnosis.
Sorry to get off topic, B-U-T the average protein in the urine should be about 8 and mine was over 1200. That has to be doing some major renal damage. Nobody seems concerned about this but me. All the MDs that I see say nothing; no suggestions; no nothings. I do not know how to correct severe proteinuria. Anybody? Any suggestions??? PLEASE,
You are right Isabella, you should be looking forward to a long and active life. So my advise to you is to make the decision to do just that.
I have multiple neuropathies, including autonomic. Like you I was uncontrolled but not diagnosed. Just blissfully ignorant.But here's what you need to understand, all of that does not matter one little bit. It serves no purpose but to bring you down. What really matters is what you decide to do from here on out and you commitment to yourself.
Even though I am going through the same types of issues as you I can not tell you what to do exactly. All I can do is tell you what I am doing and that I am experiencing slow, but steady improvement. So here it is in a nutshell, I do everything I can to keep my BG as close to normal as possible. I was told that was my only hope and still may not reverse my symptoms, but it is working. Continuing to live, see and have something close to normal body function is my motivation. Sure, I have cravings and get tempted, but I refuse to give up control of my health. I have already done all of that I can afford. I also take the supplement r-ala which all of my doctors agree is beneficial. For the most part it is as simple as that.
You have been at this far longer than I have. I'm sure you have a lot of knowledge about what does and does not work for you. My best advise would be to grab this bull by the horns and take it down. Go back to basics and pretend you are learning all over again and drive that A1c as far down as you can.
Here is a link you may find helpful.
Fight Isabella, fight.
Thank you. I`m well aware that I shouldn`t have done what I did. I am fighting, but you know it`s just that I didn`t expect those kind of complications so soon. I know that people can live very long with diabetes, but I feel like my life is ending somehow, even though my doctotor told me that my neurophathy could be stopped or even reversed if I stabilized my BG and I`ll be able to live a long life. I`m just panicking so much I mean I`m so afraid that this neuropathy is going to paralize me completely and I`m going to live few years and those will be spend in pain. I don`t want that. And what pisses me off even more is that at the clinic some boy laughed me off, when he heard my A1c was 8,1 and told me I got nothing to worry, because his was 12 and he`s still living. I swear i was nearly in histeric almost crying and I had an urge to hit him and tell him to wake up, because nothing is permament.
Anyways, I`m having a new A1c test in august and I`m hoping that it`ll be a little bit lower.
I`m just hoping that maybe this isn`t an autonomic neuropathy, that it may be something else (seeing how hard neuropathies are to diagnose especially at first stages) and maybe it has to do with something about growing up or generally something else, but at the same time I`m thanking heavens for finally opening my eyes. Even though I`ve been so unfrotunate I still belive I can fight this illness.
It is perfectly understandable to be freaking out and all the other things you are going through right now. But like I said, what really matters is what you do going forward. Find a way to eat and use insulin that works for you and keeps your BG in control. I eat about 100 carbs per day. I try to use my diet and activity level to keep my insulin use at a bare minimum. That's what works for me and keeps my A1c at 5.5 so far. I don't get the results I want every time, but more often than not I do. Just keep focused. The prize is beating the complications and well worth the effort. I can honestly tell you that if I did not have the complications I would be in hog heaven. Controlling my BG is nothing compared to dealing with complications. Really and truly it is much less of an impact on my life.
Isabella - it's after August and I would REALLY like to know how your A1C went!
Listen to Randy.
I am NOT as good with putting my thoughts out there - but if I were - I would have said JUST what he did in his 2 posts.
I DO have to tell you - I've been VERY good for a VERY long time - but my neuropathy hasn't gotten better.
I'm almost 50 - and I KNOW that makes a difference to you. You ARE so young!
Cravings are everywhere. IF you mess up - quickly get your BG under control and start again the next day.
Truthfully - stay away from carbs and the cravings for them really will start to dwindle. (Never go away completely - I'm not going to LIE to you!)
Clean out your kitchen and cupboards. Don't buy things you know are going to be triggers. If you're going to go out, eat before or bring your own treats.
Find new food loves. They're out there!
Find out if you're gluten intolerant. Or dairy.
Get enough sleep. Cut down on whatever stress you can because that messes with your BG as much as being sick can.
I sound like a Mom, because I AM a Mom!
Randy - I could NOT remember WHAT it was the made me sit up and listen. But I found it:
"I was told that was my only hope and still may not reverse my symptoms, but it is working. Continuing to live, see and have something close to normal body function is my motivation. Sure, I have cravings and get tempted, but I refuse to give up control of my health. I have already done all of that I can afford. I also take the supplement r-ala which all of my doctors agree is beneficial. For the most part it is as simple as that."
I can BE that simple.
Swldom is when WE get in our own way.
SUCH a matter of attitude.
That's what you had that caught me and what I needed right then.
Thanks Ali. That pretty much sums it up for me. Once the complications take hold it becomes a whole new battle. The LEAST of my day to day problems is my BG. As I have said before; I have been through the looking glass with regards to complications.I wish there was a way to help other PWD to understand the reality of the issues and their ability to affect their own outcome. I'm glad that something I said could serve to encourage you. Just keep plugging away!
BTW if you like chocolate, check out Sweet Perfection's Chocolate Perfection candy. Eat a whole bar, check your BG in 30 minutes and see NO increase. Very tasty stuff. I prefer the dark chocolate myself. My wife like the chocolate raspberry best.
Sorry I haven`t replied just busy with college and exams.
My A1C was better a little bit: it was 7,5 it`s still not the best, but one step at the time. At least I saw hope in my doctors eyes because most of young people don`t care about their BG levels and that`s the fact. I`ve changed.
I feel somehow better, like you said I`m young so there`s a lot for me to look for in the future. It`s not like my life just ended because of neuropathy it somehow improved. I`ve started to notice thigs I didn`t before. Besides some people have worse diseases. One of the girls from my last school died recently because of leukemia, she was 16 and it moved the whole town.
I still feel like I could fight this disease with great BG control. Sometimes I`m lacking when I go to party or something and then my BG just goes high because of alcohol, but I`ve noticed that after I check my BG a it`s to high I immediatedly try to do something with it, nothing like before when I just didn`t care.
So... wish me good luck people. Maybe somehow I will figth this neuropathy.