Neurogenic bladder
 

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

Hi Nancy
 

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-

Thanks for the reply, Aussie
 

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

Sorry I know sometimes I am confusing.
 

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

OK, I Get It Now
 

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 :p

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

can improve
 

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.

Thanks Liza Jane, rfinney and Aussie
 

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) :o .

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.

flyfishbill
 

I've been told that about length-dependent neuropathy, which I have, but I'm not sure it would work the same with small fiber neuropathy, which doesn't necessarily relate to fiber length.

lizajane
 

Thanks for making that distinction. I am not sure if my neuropathy is length dependent or not. It is primarily sensory. It began in one toe and then the same toe on the other foot and has been pretty symetrical in progression. Now it has reached my lower calves with the symptoms characterized by tingling and numbness. Only occassionally is there pain. It has been diagnosed as idiopathic axonal sensory peripheral neuropathy. After an MRI one neurologist believed that it was caused by a bone spur protruding into the spinal fluid at C 5. Another neurologist disagreed (naturally) That is why I was intriqued by your mentioning a spinal cyst. I am a clinical psychologist and have been around the medical community enough to know that diagnostic disagreement is not uncommon. I am looking for a medical facility that provides a comprehensive diagnostic workup. Any suggestions?

Depends on where you are located.
 

Obviously, the Mayo Clinic in Rochester, Minnesota and Johns Hopkins in Baltimore, Maryland come to mind, although neither is very good at taking many insurance plans. (They don't have to--they are tertiary centers.) Mayo, of course, also has sattelite facilites in Jacksonville, Florida and the Phoenix, Arizona metro areas.

Others include the Jack Miller Center for Peripheral Neuropathy in Chicago, the Cornell Weill Center for Peripheral Neuropathy in New York (that is where I go), Massachusetts General Hospital/Medical Center in Boston, the Washington University Neuromuscular Center in St. Louis, Jackson ville Shands in Jacksonville, the University of California at San Francisco Medical Center . . .generally, you're looking for a major research hospital/center where there are facilities that specialize in nerve dysfunction, both peripheral and central. That is not to say one can't find a good diagnostic doctor in smaller clinical practice, but while these do exist, they tend to be very hard to find.

Some areas of the country seem to be severely lacking in neuropathy expertise--Billye's (Silverlady's) trials and tribulations trying to find good service even at the best medical centers in Texas are well documented on these boards (she just came back from Mayo in Minnesota) and I know people in the LA basin who can't seem to find anyone who has a clue about these conditions.

glenntaj
 

Thanks for the suggestions on treatment/evaluation centers. I understand Mayo has a pretty long waiting list. My soon to be ex-neurologist will not refer me because he thinks that he has covered everyting, Does Mayo require a physcian referral or will they accept self referral with well organized records? How long is the typical wainting period. Also, do they provide cross specialty evaluations of youlr presenting problem I would appreciate any input or direction suggestions since I'm so new at thisg out differential

Doesn't have to be..
 

I understood that it doesn't have to be physcian referral from conversation I had in one of the waiting rooms while I was there, but you will expect to have to wait a long time for an appointment. I waited almost 5 months for mine. It was physcian referral. And..I was turned down at first because they felt they had nothing to offer me. Which was a "graceful" out because they have more people than appointment time. It was truly a miracle that a physcian friend of mine interceded and pleaded the case too that I got accepted.

And I am to go back up there for a two week period of theraphy that one of the doctors wants me to do and I'm having to wait until late April for that appointment.

And it is not cheap. We just got the first of the bills and they run over $25,000.00 all total. And that's not all of it. We're not sure how much the insurance will cover. You also have to be willing to stay as long as they want you to. I went up there for what I thought would be a three day stay and wound up staying one and half weeks. I'm not sure where you would be traveling from or how you would travel. We had to go by a rented van. Travel time and motel/hotel cost bills are coming in too. It looks like the cost of the hotel/motel/car rental/gasoline bills for us are around $3500.00.

Billye