Happy Holidays Everyone!

I have had small fiber peripheral neuropathy (idiopathic)in my feet, ankles and hands for several years. For me, the pain has been terrible and has been the focus of my medical treatment.

Now I have been diagnosed with neurogenic bladder. When my urologist gave me the test results, he said it was associated with my neuropathy. (Actually, once he mentioned self-catheterization [sp], I didn't catch everything he said afterward.) When I started reading about my wonderful new dx, it looked to me that a neurogenic bladder belonged with autonomic neuropathy, not a sensory small fiber neuropathy.
Can a person have 2 different types of neuropathy? Or am I heading down the wrong path?

Thanks in advance,
nancy-h

Small fibre neuropathies are both unmyelinated and thinly myelinated small fibres that control sensory,pain, & tempature information as well as a large variety of autonomic functions.

I have small fibre neuropathy, and have always felt that alot of my BP and anxiety issues are neuropathy related. My small fibre specialist said though I have passsed all my autonomic testing, I must have some degree of sporadic dysfunction now and again,often presenting with excess sympathetic activity.

There was a time there that I was unwell, every day. I couldn't put my finger on it, with alot of vague symptoms, but I had malaise almost everyday. This was attributed to the autonomic dysfunction. There is also apparently a forum for autonomic problems,but I have not found it yet.

I hope some more scientific opinions follow soon-

I still don't quite understand your answer. (Be patient with me )

Can a person have both small fiber peripheral neuropathy AND autonomic neuropathy, or, are you saying that it all depends on the degree the nerves are myelinated??

Thank you so much,
NancyH

The answer is "yes". Small fibre neuropathies often also involve to some extent, autonomic dysfunction such as what you are experiencing.But this also depends on what nerves are affected too.There are a few of us here who have small fibre neuropathies with autonomic issues. Though as Glen always says the autonomic issues are often mild and subclinical.

The autonomic nervous system involves functions that are not directly under our control such as bladder & bowel functions,BP,heart rate,gastric emptying,sweating and so forth.

You have predominantly small fibre PN with some autonomic involvment. This is not uncommon. I suggest you google autonomic pn and read up on the problem. But on a brighter note since pn symptoms change often, the problem may correct itself just as quick as it came on.

Nancy,

I hope you follow what Aussie is saying . . he is right on. I also have small fiber PN with some autonomic features. In my case, it is my heart. However, at this point, my cardiac functioning is subclinical, that is, I do not have any problems that warrant any attention.

And as with you, since there is no treatment for the PN itself, the focus has been and is on pain management. However, I remain full aware of my potential cardiac problem.

So I try and do as many healthy things as I can - this clearly makes sense not only to prevent any autonomic problems, but also to promote healing of my nerves. Even if they never heal, maintaining the best overall health I can is a cornerstone of trying to prevent further deterioration or slowing down the rate of nerve damage or helping me focus on something I can control to help my health and well-being or . . . well, I think you get the idea.

If you have not had a complete check of your autonomic functioning, you might want to think about doing so.

rfinney

Ding! The sound of my brain finally "getting it". I did read up on autonomic symptoms and besides the bladder, I may have one other symptom. Your message was quite helpful - thanks

Naturally, one is always fearful of unknown medical symptoms attacking the body. If anyone has even more information regarding this, please share it with us!

Thank you,
Nancy-H

Okay, now that you know that autonomic fibers can be "small", and involved in small fiber neuropathies, here's something else to know...

Small fiber neuropathies can improve, as can neurogenic bladders and autonomic neuropathies.

I fear that people on the forum who do not have B12 deficiency, celiac, or CIDP often think that their neuropathy is something with an irreversibly downhill course, and that is just not true.

All peripheral nerves, INCLUDING AUTONOMIC, are capable of healing.

I have a length-related axonal neuropathy. That's generally NOT small fibers, but thicker fibers, though any fiber can be affected at some point. I was diagnosed with neurogenic bladder about 10 years ago. (urge incontinence) I had autonomic testing that showed problems with the vagus nerve to the heart. I have had abnormal sweat testing. I've had bowel studies which show denervation there, too, (but that's AFTER I was found to have a spinal cyst, so that could be unrelated to the neuropathy.)

Anyway, what I want to say is that later bladder studies were normal. My autonomic testing of the vagus nerve improved during the first few years also. I've not repeated everything, so I dont' have studies which prove everything has improved, but according to how I feel--my overall neuropathy has certainly improved since 2000, even though it has not disappeared.

All neuropathy can improve if you can remove from your life whatever it is or was that was harming the nerves, and if you can give the nerves adequate nutrition and oxygen to regrow. The nerves need to be activated, which means using the muscles that are in the area innervated, even if it's a sensory neuropathy. If you don't get sensations from a nerve, you tend to stop using the muscles in that area, and disuse of the muscles causes atrophy and doesn't encourage nerves to sprout, even when they are capable of sprouting. Nerves need to be well oxygenated--so compression of small blood vessels leading to them, or small vessel hardening from atherosclerosis needs to be relieved and helped from worsening. Massage and yoga help relieve pressure on vessels and nerves. Good diet helps prevent atherosclerosis. Exercise sends signals to nerves yelling SPROUT! Supplements provide the core ingredients for new myelin, or bringing energy down long axons.

For neurogenic bladder in particular---Kegels help, and there are physical therapy methods for the perineal muscles which help--magnetic electrostim chairs that are used in urologist's offices, and electronic stimulators that, like rebuilder, can be used at home. I have a device for home use. It's covered by medicare, and when something is covered by medicare it becomes covered by all insurance by default. Unless you are having total urinary retention, there is no reason you'd ever need to self-catheterize. (And, if you are having urinary retention, it would be very important for you to ask yourself a couple of other questions---related to cauda equina syndrome--do you have back pain? Have you had an MRI of your LS spine to look for spinal stenosis?)

I suspect you are having some problems with urge/stress incontinence and not retention. If I'm wrong, please do read up on cauda equina syndrome. If I'm right, you could benefit from physical therapy for the perineum.

So, take heart. Take your supplements, exercise, keep stress down, and things might get better. Autonomic neuropathy is not a death sentence, nor a sentence for inexorable decline. Idiopathic neuropathy disrupts life, but is generally manageable, AND, I am convinced from my experience here---if you have idiopathic neuropathy, you probably had an exposure to a neurotoxin (be it a chemical or antibody or microorganism) at some point in your life, which will probably not be identified, and the task is to move forward living a life as free from neurotoxins as possible.

This information has prepared me to ask specific questions to both my urologist and neurologist and has helped alleviate my fears (at least for now) .

When the problem with my bladder was found, the question of MS came up. Even though I was tested for MS in 2004, I recently had 3 MRI's; the brain, the neck & column and the lower back. I do have DDD and some herniation at C4,5 & C5,6 but that's not new. Certainly there is no cauda equina or spinal stenosis (that's a couple of my husband's issues).

As I get into the treatment phase of this neurogenic bladder, I may have some questions for you, Liza Jane. I hope your Personal Mailbox will be open for those.

Once again, thanks all,
nancy-h

nancy--of course, pm anytime you need.

I have read and have been told that in small fiber sensory neuropathy autonomic symptoms typically begin to appear when the primary symptoms of the neuropathy, e.g. numbness, tingling, etc reach upper to mid calf. These include, but are not limited to bladder disturbances, gastrointestinal problems, erectile dysfunction and sweating or flush sensations in the neck and head area. This is also the time when the finger tips begin to show the first signs of sensory neuropathy.