www.incontinentsupport.org

Don: I am glad you are getting tested to find if you have neuropathy. Hopefully they will be able to tell what king you have.
I’ve been fighting neuropathy CIDP for 20 plus years and it’s been a battle all uphill I am going on 68yrs old.

Autonomic neuropathy affects the internal organs and is one of the more serious types of neuropathies.

Over the years I have had so many different test I thought I was a pin cushion and Ginny Pig and I am still going for them.

I hope you don’t have neuropathy but something simple easy to fix as there is no cure for neuropathy.

Best of luck
Lyle

i been taking gabapentin twice a day 300 mg =600 its seems to help i got some feeling back in my feet an havent had the feeling that i am being ice pick in them

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well ibs thats enought

I take gabapentin and cymbalta for neuropathy pain. They do help, I don't get the stabbing pains I once had. I think it did have some positive impact on my bladder. Before I started taking gabapentin, my bladder would jump around much of the day, I assume from contractions. After gabapentin, it mostly stopped. I've tried all the normal medications for over-active bladder, but they don't do anything. My issue seems to be with my sphincter (I guess) and the fact that I have little or no feeling of bladder or bowel content. Many times, my bladder just empties. If I'm wearing a diaper, I can feel the warmth, if not, I can feel the wetness running down my leg. It has always been this way. I think the gabapentin has made my neuropathy pain much more manageable, but lately, I've been noticing increased leg and ankle pain that breaks through in the evenings. From my readings, I think I'm at an early stage of autonomic neuropathy. My stomach and intestines seem to have slowed down. That is one indication. I haven't had any heart issues, but went to cardiologist this morning because of arrhythmia. She wasn't concerned, but I get a walk around EKG machine next week to make sure. This whole nerve thing is so sketchy, it seems to me. In my case, it works sometimes and not others. So what causes it to short circuit or whatever it is is a mystery. And even if they knew, not sure they can fix it. The only thing they tell me about my peripheral neuropathy is to manage the pain, there is no fix. I'd gladly pay you Tuesday for good nerves today

dangoch

I am no expert on neuropathy it is a very complicated disease.
Neuropathy is an autoimmune disorder, it is your immune system that is destroying your nerves by destroying the Milan sheath that protects the nerves.
Think of it like this if you have an electrical wire it has a rubber coating to stop it from shorting out. If you remove the rubber it’s short out and depending which one it attacks is where you will have the problem.

As for your meds gabapentin I believe is the generic for Neurontin which is a pain killer Cymbalta is also a pain killer that also is used for depression, mental problems and spasms I been on both of these did not help me.

I am on so many drugs but the pain killers are Fentanyl patches, Valium, Tylenol #3 and Celebrex. I am on heart, stomach and several bladder meds.
Nerve pain is the hardest to control.

Lyle

Lyle, in my case, diabetes is supposedly affecting my nerves, at least that is what is likely causing the peripheral neuropathy. As I understand it, researchers don't really fully understand why diabetes affects the nerves the way they do. I try to keep my blood glucose at proper levels, but I don't live by the glucose meter so my BG does spike after meals but returns to proper levels after digestion. Some people try to keep those spikes low, but then you must use fast acting insulin to maintain very close levels. Life is too short in my opinion to waste time doing that, even if it makes my neuropathy worse. The issue is I have a 50 year history with incontinence, not complete, mostly cyclic. I feel fairly well normally, just some of these inconveniences. Pain management is about all you can do for neuropathy, since there is no fix. I know that, just wish I didn't have to deal with it. But there isn't much that can be done on areas that have no feeling. I do remember having feeling of full bladder years ago, but now I don't. I'm just looking to understand why this is happening, if at all possible.

I know all about nerve damage in my case. I have scar tissue that is wrapped around the my lower spinal cord and root nerves like an anaconda strangling it's prey. My feet always burn or hurt. I get pain in my toes like a hot needle being slowly pushed through some of my toes. My bladder and bowels just do whatever they want, when they want. If it wasn't for constipation I wouldn't have any bowel control at all. Most of the time my leg muscles ache like I just hiked 10 miles up a steep hill. I can barely walk most days.

Gabapentin gave me kidney stones. Nortripiline made constipation much worse. Morphine is the only pain killer strong enough to give me some relief that my body can still tolerate. Oh the joy.

Compassion goes out to anyone that has experienced nerve pain due to damage. It is a life altering experience that nobody should have to endure.

Doug

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When life hands you a lemon, make lemonade.

SeattleDoug:
From what you say “scar tissue that is wrapped around the my lower spinal cord” is not typical neuropathy. Typical neuropathy is the Immune System attacking the myelin Sheath. I am guessing if you have typical tingling pain in your feet hands it would neuropathy like I said I am no expert.

Dangoch:
has Diabetes 50% of the people with Diabetes have some neuropathy.
Diabetic neuropathy is bad in its self but the diabetes is what is really bad. Most neurologist usually detect neuropathy buy what the patent is saying. Testing can confirm neuropathy with a EMG.

Guillain-Barre Syndrome is another Immune System disease and probably the most serious of them all. Doctors can’t tell you why one person gets Guillain-Barre Syndrome and some get CIDP and others get Lupus and the list goes on. Doctors know you can come down with Guillain-Barre Syndrome from a flu shot but not all people that get a flu shot comes down with it.
Diabetes is one disease that doctors can tell the causes neuropathy 50% of diabetics also have it so easy diagnoses. I am not making light of it diabetes is a bad disease and any neuropathy is not good but usually not serious just the pain unless some other type of neuropathy is involved like autonomic neuropathy.

Some neuropathy’s yes today doctors can tell you X caused it but they cannot tell you why some people get it and others don’t.
When I first came down with CIDP it was through an EMG and blood work simple test. When my neurologist told me he said we don’t know the cause or why. He then put me on Immune Gollum and I been on it for almost 20yrs and still am.

Today there are a lot of different ways to try and control pain but there is still no cure.
I have been on just about every pain meds there are but nothing helps unless I want to be in a stupor all of the time.
Neurontin is number one painkiller for neuropathy but it did not help me.


SeattleDoug: I also have back injuries that was look at.
T2-T1 budge disk some narrowing of the Connell.
L4-L5 also some narrowing.
Scar tissue found both at both sights T2-T1 and at L4-L5

Dangoch: how much Neurontin are you on?
I was on 3200ml and I could not function.

SeattleDoug: said it very well

Compassion goes out to anyone that has experienced nerve pain due to damage. It is a life altering experience that nobody should have to endure.

I wish everyone well
Lyle

I have been doing research on neuropathy's. I have read that some are serious and few can cause death. I hope I have none of that. So far, the only symptoms I have are bladder and bowel incontinence and diarrhea. I don't have any pain, tingling, or numbness. The doctor asked me about sexual disfunction. I don't have any of that. But I have read that neuropathys are progressive and may take years to develop. I became bladder incontinent first about 3 years ago, then I came down with diarrhea about 1.5 years ago (chronic everyday). At first they thought it was IBS but I'm not sure. Theres alot of maybe's. Then shortly after coming down with diarrhea I got bowel incontinence. So far, those are the only symptoms I have. I have had numerous physicals and medical tests. EKG's, CT scans, blood tests, breathing tests and urology tests. Numerous tests. Most have been normal. I do have nocturnal hyoxemia where I desaturate in my sleep so I have to sleep with oxygen. I don't know if that can be caused by a neuropathy though. I'm hoping its not a neuropathy, this is starting to scare me.

Don:

Your symptoms sound similar to the way I started except I started with bowel incontinence.
Of course I went to a Gastrologists it was bowel and after months of testing he found little to suggested anything was wrong and said I had IBS cause unknown.
Now remember this was 20yrs ago.

From their bladder started to leak this time to an urologist and again found nothing wrong.
I then went to a neurologist on my family doctor advice he again found nothing.

My wife and agreed no more test so I lived with it.

I worked at a big company as a maintenance millwright machines a long title saying I repaired large machinery.
I also had a machine shop in my home and built custom firearms. One of my customers was my wife doctor who suggested I go back and see a neurologist this was 20 plus years ago. He made the appointment I went and after an office exam he said he say nothing wrong. Well I kind of blew my lid telling I now know why his sign said he is practicing medicine on my job I was called a professional. Well a long story he did an EMG and found I had neuropathy. From there I been on IVIg or steroids and or Plasmapheresis or a combination of all the above.

But if you do have neuropathy and it is affecting internal organs then it becomes autonomic neuropathy. Peripheral neuropathy means extremities like the hands and feet. Autonomic neuropathy means the autonomic organs like bowel, bladder heart and so on.

I know I am repeating myself but if you even think you have any type of neuropathy get to a good neurologist it will only get worse. One thing to remember once a nerve is destroyed it never comes back.

Most people that come down with neuropathy start with peripheral neuropathy first. That is the calling card I guess.

One last though when I was looking for answers neuropathy was not considered a disease it just went along with diabetes. Even the treatment I am currently was considered experimental. I think Guillain-Barre syndrome and CIDP seem to be linked and brought attention to world of neuropathy.

Lyle

I am seeing a neurologist and I have a EMG scheduled for Dec 5th. I have an MRI tomorrow and he is doing blood tests. They know there is something wrong. I have bladder and bowel incon and diarrhea (unexplained). I too have been to urology and gastroenterology. I definitive cause but my bladder spasms showed up on urodynamics. I was dx'd OAB w/ urge incon. For Gastro, I had colonoscopy and endoscopy along with some other tests. No cause found for diarrhea. I only have breathing problems at night. I don't stop breathing, I just desaturate. I don't know if this could be caused by neuropathy or not. Maybe I am wrong, maybe this is all just caused by my psych meds. But thats some very severe side effects if they are and I'm 1 in a million.

If I do have a neuropathy, then it seems to fit the criteria of a chronic neuropathy. I have read that these come on very slowly. As I mentioned above, I just have incon issues with diarrhea. I have no pain or numbness. I read something encouraging that chronic neuropathies are rarely fatal so that makes me feel good. I am very worried about all this.