Definition of PN?
 

I think I have PN, but I was wondering does PN include carpal tunnel or is that a seperate problem? I'm not sure what PN covers.
I had a nerve conduction study done yesterday, (first time) and that was absolute torture! I didn't think it would hurt so much!:o lol
My Neurologist is saying it's just carpal tunnel I have in my hands, even though the pain is different in each hand. Right is definitely carpal tunnel, but left, the numbness and pain is on the back of the hand and not at the wrist.
I also mentioned to him yesterday, that I have pain and numbness in my left foot now too. But he only tested my hands/arms, and just said I have carpal tunnel, and didn't say anymore. I'm hoping he'll tell me more when I next see him at my normal appointment...
:confused:
~Jaime~

Peripheral neuropathy--
 

--is the term given for any dysfunction of nervous tissue that lies outside the central nervous system--the brain and the spinal cord.

It can certainly include carpal tunnel, as well as spinal radiculopathy (compression of nerve roots next to the spine by disk or bone), and damage to any nerves in between.

There are over 200 known causes of neuropathy, ranging from the traumatic (compression), to the metabolic (diabetes, hypothyroid), to the nutritional (many), to the toxic (many) to the autoimmune, to the hereditary/genetic. Different types of nerve can be affected--motor, large myelinated sensory, small unmyelinated sensory, autonomic. As many people here will tell you, teasing out a cause is often a long, difficult process, and the state of the science is such that as many as a quarter of all cases currently remain stubbornly "idiopathic"--without obvious known origin. And to make things even more confusing, certain conditions of the brain and spinal cord (MS, B12 deficiency, others) can produce symptoms that exactly mimic those of peripheral nerve damage, and in the same apparent body parts.

Carpal tunnel, BTW, doesn't have to manifest just in the wrist--it can involve the back of the hand, or side. Often there is other damage going on further down the arm, in the elbow/ulnar, or even the shoulder (brachial plexus) areas.

If your foot is involved now as well, that implies a more systemic cause.

Have you seen our lovely diagnostic spreadsheets at www.lizajane.org? This is about as comprehensive a listing of tests for neural symptoms as you can find, and is a great way to track test results over time, as well as suggest tests to physicians--I suspect you haven't had even a fraction of the tests listed there.

25 % of PN is ideopathic, no known cause, 40% of those are probably hereditary and either not diagnosed because the proper testing isnt done or unable to be diagnosed at this time with the current technology. I wonder what percent of a diagnosed cause of PN are incorrect and should be ideopathic until the testing process is done. This group would/may include people who have diabetes, or have drank in the past who would have these causes diagnosed for their PN without any other testing or with no testing beyond an emg. We have met a number of people here where that is the case. With pre diabetes , which i believe is the cause for some or maybe many of those with unknown cause of their pn, how many doctors are just grabbing onto that cause without looking at the others or testing for anything beyond glucose tolerance or A1C or even fasting glucose. How many people like Jaime who because they have carpal tunnel in one hand or suspected carpal or tarsel tunnel have that cause attributed to them and are operated on and the rest the symptoms or areas of involvement ignored until they cant be any longer ?

My PN is carpal tunnel, inoperable. Mine is caused by vitamin/mineral deficiencies caused by undiagnosed celiac disease. This,

I find to be very true! My neurologist tells me my PN is centralized in my wrist and hands, but I think he is nuts. I have so much trouble with my right shoulder. The nerves bunch up and the pain gets so bad, it doesn't let up until the nerves relax. I do truly think it is all connected. It seems to travel from one area to the other, from my wrist to my shoulder, I always know when my shoulder will act up before it does.

Hi All.

What I find fascinating is that all the doctors that Alan went to (during the 15 years we tried to find out why this guy had PN). Every single doctor said "you can't inherit neuropathy". Every single one. Even the neurologists, and believe me he saw more than one neurologist. He saw this specialist and that specialist.

They all poo poohed the fact that his mom had Guillian Barre Syndrome.

But they ALL ABSOLUTELY SAID UNEQUIVICALLY "YOU CANNOT INHERIT NEUROPATHY".

So I read the posts here all the time, and I just read Glenn's post and he mentions heriditary/genetic.

Now if a neurologist (who is supposed to be a specialist), can look us in the eye and say: "You cannot inherit any form of neuropathy". then who am I to go "oh yes you can'.

I'd look like a complete idiot. Exactly like I looked when I tried to explain Methyl B-12 to several of my doctors. They just shook their heads like I was a stupid 60 year old.

Well, who is stupid now????

Thank you Glenn and everyone else for your advice, it's all quite interesting.
Yes, I'm new to this, and the NCS was the first test I've had done. What other tests are there?
I think my Neurologist sent me for the NCS, just so I would stop asking him so many questions! lol But I think it has raised a lot more questions that I will have to ask him at my next appointment! I'd like to know the full results, and what the options are next.
The pain is not just in my wrist, it's in the elbow area (he did test the nerves at the elbow too) and shoulders. I have osteo-arthritis in my shoulders and most other joints, so I guess that all adds to the problem...and confusion as to the cause of it all! Time and more tests will tell, I guess!

~Jaime~

Hi Jaime & welcome to this forum.... another Victorian amongst here :)
You may like to check this out mate, http://www.ninds.nih.gov/disorders/p...neuropathy.htm

Brian :)

Jamie
 

Hi and welcome,
I saw your post and to be honest I
wanted Glen to step in first. We all
need a Glen in our life,there are many
bright people on this forum,many who
go though those painful tests.Glen explains
or puts it together,well let's say in a way
to make one understand..

Then we all move in for the attack. lol
I am a Diabetic have been for a long time.
Is that why I have PN well yes and no.
A lot of Neuro's get fixed on one issue
and say ah ha there you go,that's your
problem..Get a second opinion,after
many tests I have ployneuropathy's.
Spine,from feet to knees, hands tp elbows,
shoulder ,around to neck across back. And
in the tummy.

J. is going to come on and tell you to read
the stickes,please do she has told me at least
300 hundred times,but she doesn't get angry.Ha

Do I believe right here and now there's a cure,NO
do I think for my Children and any of there friend 's who may or
get PN in the future yes I do..But there is help and this
group can help,they know Drs.,they can tell you about tests.
and they can make you laugh,well I will stop befor I scare you off.
Many Blessings and Good luck Sue PS I am 61 but there are all ages
here..:)

If you're having symptoms all down the arm--
 

--shoulder to hand/fingers, in addition to getting worked up for some of the more systemic causes of neuropathy listed on the Liza Jane charts, you should get some MRI's of cervical spine and shoulder areas (if you haven't already).

There are two conditions known as Brachial Plexopathy and Thoracic Outlet Syndrome that involve compression of nerves that go from the body cavity near the spine and down the arms; depending on where the compression is one can get symptoms anywhere from shoulder to fingertips. We have a good forum for these here that you should look through:

http://neurotalk.psychcentral.com/forum24.html

And, of course, compression at cervical nerve roots can cause these symptoms as well.

There is also the "double crush phenomenon"--a systemic neuromorbid condition (like diabetes, or autoimmune vasculitis) doesn't by itself cause much in the way of symptoms, but add another insult, such as compression, and then you get them. (Almost anyone with a systemic neuropathy cause is more prone to compressive effects--the already damaged nerves are just more sensitive).

Are your symptoms in all areas similar? Do you hve the same "type" of pain? There's nociceptive (normal) pain, then there's nerve pain (burning, lancating, elctrical, stinging--just some of the words used for this hard to describe sensation), and you can get numbness, feelings of things (i.e., fabric) touching skin/sensations of wind/water when there's nothing there, vibrations--the whole gamut of what is referred to as parastheses (literally, sensations beyond the normal).

most of carpal tunnel
 

is metabolic in nature.

Low thyroid function deposits a substance under the tendons that pinches off the carpal and tarsal tunnels giving the symptoms.

Fluid retention can also cause this. I have found that P5P..a special B6 is very useful for this. Also one gets fluid retention with thiamine problems.
Thiamine 200-300mg a day may help. Or the newer Benfotiamine 150 - 300mg a day (which I switched to recently), is also good. It in fact seems better to me for this edema/fluid issue. Benfotiamine is a special form of thiamine, and also over the counter. You will most likely have to get it online, I have never seen it in stores.
It has just become more affordable too. I get mine at iherb.com

Also hormones will cause carpal tunnel. When I was pregnant I had a terrible time and lost both hands, and couldn't even sign my name. Much of it resolved after delivery, but it returned as just irritating.(instead of debilitating).
So if you take birth control pills or estrogen, you might see carpal tunnel.
This is rather like the pregnancy effects.

If you are gluten sensitive or have other food intolerances, you may see carpal tunnel effects too. Right now I am reacting to nightshades dramatically. (potatoes give me burning). Eliminating a suspected culprit... for 2 weeks and reintroducing it, and getting symptoms is the telling sign.
I would start with gluten first, since it is most common. Then move on to others if you don't react to gluten. Nightshades (tomato peppers potato), Lily family (garlic onion), Corn, dairy, soy are the most common others.

I think, along with some scientists that carpal tunnel is a symptom that something in your metabolic profile is not working right. I think you have to be a detective to target it.

Some other things: If you take drugs for your other issues, some of them may be depleting you of nutrients.
This might show up as carpal tunnel.
And also, eating MSG contain foods (monosodium glutamate) stimulates the nervous system in a negative way.
So check your labels. Restaurant food typically adds this heavily...so anything that tastes really good and seductive
when you eat out can be loaded with this additive. Soups especially or seasoned fries, etc.

Mrs D, a question.
Does the surgical route always have to be taken
to cure/reduce CTS symptoms?
I've had CTS for years & its getting slowly, progressively worse.
My orthopedic surgeon has been giving me cortisone shots about once a year for the last 3 yrs, but he says it can get so bad that even surgery won't help.
(I'm staving off the surgery, for a number of different reasons - mostly cause I can't take the long 'down time' of not working during recuperation.)
But he's a surgeon. His job is cutting, that's what he likes to do.
(and gets a hefty chunk if income from doing)
The cortisone & P-5-P help a lot, but is there a non-surgical way
to reverse the progression? Supplements? Therapy? Anything?

So, now that we are on this subject--my friend Kev has numb fingers and has a hard time playing guitar anymore. He cant feel where his fingers are. Is there anything he can take that may help get some of that feeling back? He is a type 2 diabetic with neuropathy. He is taking 3000mcg of B12 daily, I did get him going on that.

Bob...
 

You play string instruments...and this is hard on the hands. My son is already having troubles.

I would suggest you try the Benfotiamine... Since it came down drastically in price I can now afford it. (SAMe takes up alot of my budget in that respect).

It has been wonderful for me. I have always needed the thiamine. This is working better. I can have "pressure" palsies at times sleeping, and they have gone away. For best results I use 300mg a day. I've tried going back to 150, but over time I get some arm falling asleep at night.

You can try wearing the carpal tunnel braces at night when you are sleeping.
They work for me. When I garden alot, or use tools/sanding etc I get little flare ups and use the braces at night. They keep your hands in a position that does not pinch the nerve, so it can heal etc.

I have problems with salt, MSG etc too.

I had the "cortisone' shot during my pregnancy, on my right hand only. Since I was so impaired I could not function. It worked, and after I delivered I was good enough to go without further surgery thoughts about 3 days after my C-section. If I do any heavy work with rock, garden, or twisting of hands, I will get a flare up.

I think surgery should be a last resort. While it seems more accurate now with the lasers they use, it still can go wrong...and I am basically a surgical chicken!! :rolleyes:

Thanks for the information. Quite an extensive and interesting list of possibilities. I'd never heard of any of these causes...
I've had wrist/hand pains & numbness for years, but never wanted to complain about it, (incase I lost my job at the time!) I just thought (and have been told by others) that carpal tunnel developes from repetitive work (RSI), and I know that I have done a lot of repetitive jobs for over 20 years, and also I write/type/sketch/paint and have other hobbies that put strain on the wrists and hands. I also now have arthritis in most joints, so I'm sure that doesn't help things...
I'll ask about some of these possible causes at my next appointment, but I'm sure my Neurologist will probably think I'm crazy!:o lol

If it is CTS, you'll be best off getting a referral
from your neuro to an orthopedic doc.

My neuro is quite against doing surgeries on small fiber neuropathics, to fix 'neuro' issues, as he feels they are generally not very successful, due to the nature of small fiber. Now that is not to say if it is 'simple' carpal tunnel, (no small fiber) that surgery would not be successful. It would not be successful for me, because of the SNF. If you don't have SFN, it could be successful, but I would try all other options first.

Thanks for the info, Mrs D.
Yup, I've had to put the guitars on the 'back burner' for quite a while, now. Altho it is easier to play the classical acoustic one with nylon strings (Classical/Flamenco guitar style doesn't use picks), than the heavier tension of the steel stringed acoustic ones. Even with light tension strings. I don't have, or play electrics, with super-slinky xtra-light strings.
I've taken up the Clawhammer style banjo, lately (past 18+ mos). Lower tension strings and can be tuned down even lower. No picks are used. I'm considering an old time repro model with nylgut strings for even less tension. Any of them are much easier to play than my guitars. My left hand just doesn't have the grip or strength and my right gets numb and I lose/drop the pick.

I'll try the 300 mgs Benfotiamine. I do take 100 mgs of regular B1 (thiamine) daily, tho. Maybe a switch will help.

I do wear a brace every nite on my R wrist while sleeping, but still get the numbness/pain waking me up, and the L is starting to get a bit worse.
Any suggestions on brand (lowest cost, but still good quality) at iherb?
Thanks again,

I chose Doctor's Best brand.
 

for the benfotiamine.
http://www.iherb.com/ProductDetails.aspx?c=1&pid=42

Jaime--- If you were not given these options by your doctor, it is clear to me he does not know about them! Otherwise you'd know them already!
Don't expect doctors to know common sense things, things others have discovered. Most of them stay pretty insulated, in their own little world.

I didn't know there were other options or causes before now, so that's why it has never been mentioned. The cause I said is obvious, and that's the only one talked about so far. I haven't even talked with my GP about it at all yet. It was my neurologist who I talked with and it was he who sent me for the NCS, after all, I see him every month.
It's all new to me, so obviously I don't know what questions to ask...

Jamie read though all of the posts more then once,since I have the issues
with the hands,I am so glad you posted..I miss drumming,a great stress reliever. Then start writing down your questions and speak up..I had a
messed up sugery on my feet. Since then I really try to find other options,
but thats me. Mrs.d gave you such good options before jumping into
aanything drastic..Good luck Sue

Hi Jamie - This is how my PN started. I was first diagnosed as having carpal tunnel. I had 2 hand surgeries and the worst of the pain was gone but my hands were still numb and tingly. At least after the surgeries I was able to sleep again.

I was just wondering what other treatments there were, (that would/might be helpful) besides surgery for the Carpal Tunnel? Some have mentioned they have had surgery for it, but the thought of surgery scares me too much! I thought that it would be a last resort anyway. I would like to try other things first, of course.
Anyway, I'm still waiting to see my neuro about the results first...
:)
~Jaime~

I had a carpal tunnel operation on one wrist, even though going by the nerve conduction test they said both hands were pretty bad, but only the one hand was giving me grief, my symptoms were a throbbing & swollen hand, when i had the op it fixed it straight away and haven't had a problem with it since, the other hand still has not bothered me yet and that was about 7 years ago, touch wood :)

At that time i didn't know there were alternatives to try first, i have heard of good and bad results from the op, so i think it wise to try other methods first.
keeping my hand straight by using a splint helped some.
good luck
Brian :)

A friend of mine recently had both wrists done, at separate times, of course, and he thinks it's the best decision he ever made. He wishes he had done it sooner. My neuro told me mine carpal tunnel is inoperable, I didn't know there were any inoperable, but I guess so. Maybe that's why I also have pain in my elbows and shoulders too. I guess it's an individual decision.

My Neurologist told me yesterday (confirming the Carpal Tunnel diagnosis), he wanted me to try the wrist splints first. He told me the choices were splints or surgery, but would rather me try the splints first. So, he's making an appointment for me to get them fitted...I have no idea what that's going to cost me!:eek: lol
I wonder if they will be much help? I hope they aren't too uncomfortable.:o
~Jaime~

My insurance totally covered my splints and the fitting. I just got mine in December 07, and of course, they way over charge the insurance company for them, so that they get what they want, we all know that. They say they don't, but they do. Altogether, they charged my insurance company $226.84 and the insurance paid $41.76, which is about the same thing I paid for them 10 yrs ago in Michigan, I am now in New York. He actually, just put them on my hands, to make sure they were the right size and that was it. Now my friend, he said the guy bent it this way, and that way, and spent a lot of time adjusting it to fit his hand. He didn't spend anytime adjusting it to mine, I found that weird.

Ten years ago when I had first them, I was to wear them for 3 weeks, 24 hours a day, and I was put on anti-inflamatory meds. They do help, while you are wearing them, but they greatly limit what you can do, and never drive with them on!:eek: FYI: If you get in an accident, you can be sued because you are wearing them! I was not informed of that until this time. I can't work wearing one on my right hand, I can not write with one on. They may help you. My neuro tells me to at least wear them while sleeping and any time I am doing any lifting, anything that puts stress on my hands.

Wrist splints
 

Well, I got my wrist splints yesterday, I'm still trying to get used to them. They were a little more expensive than I thought they would be, so I got a good one for my right hand, and a cheaper plastic molded one for the left hand, for now. I'm being sent for therapy, thankfully they referred me to a hand therapist in my hometown, instead of having to travel to the city all the time!
But in time I'm sure I'll end up having surgery on my right hand, as it's getting worse, but that's my own fault I guess.....I use it too much!:o lol

~Jaime~

Jamie, i totally agree with Deb, actually i didn't know you could even buy splints for carpal tunnel, i made mine up myself, i only found it helpful for sleeping only as it restricts your normal hand usage to much during the day.

If it comes to having to have the op, for me it was a real breeze, i was done down at the Geelong hospital at the day surgery part, only takes a few hours and was allowed to go home about an hour after the op.

Brian :)