Actually, my first neurologist used profound peripheral neuropathy in his written evaluation of the EMG.

1. PROFOUND AXONAL NEUROPATHY: RIGHT AND LEFT PERONEAL AND TIBIAL NERVES.
2. PERIPHERAL NEUROPATHY: RIGHT AND LEFT PERONEAL AND TIBIAL NERVES.
3. RIGHT AND LEFT SURAL NERVE NEUROPATHY.

I didn't question it because I had so much going on at the time (torn meniscus stuck in my left knee joint) 3 moves in 5 months, one 18 hours from the other, and a zillion other things. I didn't even understand how bad my PN was! I didn't even KNOW I had it until it was found and was already profound. Isn't that bizarre. Clearly I am not well attuned to what is going on.

When my new Duke neurologist ran the EMG again in November, four years later, he compared the results, and said they were the same.

I then said, oh then my legs aren't worse!

My Duke neurologist said: Your legs CAN'T GET WORSE, when the nerve is gone and gives no response, it can't do less than no response.

So my first doctor used the term 'profound' to mean 'total and complete'.

I was so dumfounded by the diagnosis and the following misery with my knee surgery and moves, and further medical problems, that I just let the whole thing slide.

As it turns out, there wasn't anything I could do about the PN, then or now. I am learning to live with it.

To accept that I have a degree of pain and discomfort, and that I always sit unless I'm doing something simple (unloading the dishwasher, doing laundry) and only exercise at the health club.

I kept thinking I should be doing more. But now I know that profound PN is like profound hearing loss. It isn't commonly used related to PN, but my first neurologist was an older man, of European origin, and may have used 'old-fashioned terminology".


Profound Hearing Loss 80 dB or more Difficulty hearing and understanding, even with amplification

Profound is the most hearing loss you can have. Fortunately I only have moderate hearing loss, with one ear actually recovering some hearing because my loss is related to Menierie's and can come and go.

Hugs, Elaine

ElaineD,
I would not be so sure there nothing you can do for your PN. I'm not saying I know what it is, but just because your doctor says there is nothing you can do about it doesn't make it so. There is a lot out there that mainstream doctors do not know about. There is the potential that something exists that could help you, regarding supplementation, diet, exercise, stress, acupuncture, a nerve stimulation device, chiropractic, traditional Chinese medicine, surgery, or something else. Keep searching and don't give up hope.
Ron

That doesn't agree with the Wiki article (see previous post). Not being argumentative; just noting—and curious about—the difference.

Doc

In my experience doctors say lots of strange and sometimes
inaccurate or misleading things. They may be brief and use words that are not exactly representative of what is showing up.
Some doctors tell young PNers who show up here, after little testing, that they will be in a wheelchair soon, and that is it!
The range of statements, is quite large, and often closes doors to patients, rather than opening opportunities.

I believe there is always hope when it comes to healing.
Doctors do lots of things, test and give drugs typically (which may be toxic to nerves even--and usually won't admit it) but they do not really enable healing, when it comes to nerve damage.
We have known for many years that the peripheral nerves are capable of healing. My cut and damaged nerves severed by surgery when I was 12, in my left foot, were numb for decades.
But when I was around 40, I noticed I could feel things again in that instep and toes! They did grow back and heal...not 100%, but quite a bit. It took time though.

If you, Elaine, are not in a wheelchair all the time, but can still walk and get around, and feel something in your legs...pain, etc, then the nerves are not totally dead. You may need a mobility aid to help you balance, but I don't recall reading about braces or foot drop interventions yet.

Here is an interesting nerve path illustration, that can be moved to view in 360 degrees.
http://www.innerbody.com/anatomy/nervous/leg-foot
It shows the major nerves in your report.

If you do not have foot drop, and require braces on the affected foot, then you have some peroneal nerve activity.

Since you have stated that you don't know where your feet are, that suggests afferent damage. Afferent proproceptive nerves, are myelinated, and those may be damaged. However, it is odd you have no hand/arm involvement yet, even though you have an autoimmune issue, which typically does attack myelin everywhere.
So you are a puzzling mixture of nerve damage.
Here is a handy site to explain the 4 major fibers in afferent nerves:
http://neurotalk.psychcentral.com/thread194446.html

When you didn't "know" you managed all that moving stress. It is remarkable. So I do think you are a remarkable person.

I do think you should do all you can to prevent falls, by using appropriate walking sticks, canes, or walkers. I just bought a walker for myself...a brand new one I found at a garage sale!
It is waiting in the closet in case my walking deteriorates further.
I have a left hip tendon issue, which impairs me more and more.
But not yet. (I have many stairs to contend with, 15 of them to get to my front door, and another 13 to get to my bedroom and studio.) Some days I use my walking stick in the house, for those stairs, and other times not.

Constantly keeping that word "profound" in your mind, I think is
not constructive to any healing that might be there for you. 4 yrs is not a very long time in PN terms... nerves are not speedy in recovery. Most of the medical stuff we are exposed to today, is temporary. New information will be coming down the pike in the near future, and that may reverse what you are hearing now from your medical reports. It all remains quite tenuous IMO.

I think this is important. I know that's easy for me to say as I have been pretty "lucky", but I did a lot better than "expected" or "predicted" by the experts.

Both neurologists I saw and the medical people in rehab told me to expect no "cure". And while technically they may have been right - my nerves haven't fully healed - I am doing 80% better than 9 months ago. Again, partly down to "luck", but partly down to me trying everything I could try after sifting through the advice on this forum.

I'm not exaggerating when I say that if I had fully accepted their professional opinion that I might be going round in a wheelchair right now.

And thinking about it: having sural nerves that are completely "dead" (EMG wise) might be called "profound" too.

To the OP - Jason, you might - given the history with alcohol - also look into vitamin B1 in the form of Benfotiamine. (150mg/day) It's one of the vitamins that get "flushed out" when consuming alcohol, and B1 treatments are common in countries like Japan.

Yes I have been seen by a neurologist they did the test where they shock you and the one where they stick you with needle I don't remember what the test was called but the neurologist told me to file for disability.the neurologist sent the results to my primary at the time I have not seen the results.I am currently going through doc change so records are hard to come by.what I am sure of is the amount of pain I am in is anyone taking any stronger pain med. And if so what and how much

Interesting comments, interesting topic.

I have found that people relate very very differently to doctors, and that there are many many kinds of doctors. I have also found that there is great suspicion of medical science and the pharmaceutical companies, as well as of government agencies and programs.

Truly it is a challenge to manage all of the information and our own medical conditions, especially for those of us with more than the average number of issues.

I also know that individual experiences, even LOTS of individual experiences are NOT research data. Our human nature values personal accounts far above objective scientific data, which is why we seek them so avidly. I also know that what works for me may be terrible for you, and that what works for me now, may cease to work, or actually cause me a problem.

Life is fraught with challenges!

My husband has PHD in biology taught and did transplantation immunology research in a Medical School in Boston for 25 years. While there, he taught Gross anatomy, dissection of the human body, to medical students for 10 years. He is still teaching anatomy and physiology at nearby college, part time, at age 74. He knows exactly every single part of our bodies. His knowledge is stunning. He carried out kidney and heart transplants in rats, dogs and goats. I wouldn't hesitate to have him perform an emergency tracheotomy for me if he had to.

I am not scientific at all, have only an MBA, and worked in business and academia, so I'm at a disadvantage when it comes to medical things, at a personal level. I rely upon my husband, research, and most of all on forums like this one. Always realizing that we have to screen out some sources and types of information.

On one of my forums recently a poster constantly said that Adrenaline is bad for your body. I tried to sort that out, but she was adamant. Adrenaline = bad.

And I do make errors. Certainly my entire PN isn't profound. The loss in my Axonal Nerve is the only profound loss that I have. The others are less than profound. I do have foot drop, which is why I trip on a flat floor. Walking is so hard for me that I prefer not to attempt it for any length of time, it exhausts me, and with both auto immune and immune deficiency conditions, I cannot afford to become over tired. I rely on my health club activity for true exercise.

I see that there is a definition of deafness beyond profound! The range I looked at was described by the Beltone hearing aid people, and I should have known better than to use their definitions. I imagine the hearing aid folks don't deal with absolute and total hearing loss, so it doesn't get on their chart.

I have a walker on hand, but if I needed one I would get one with more bells and whistles and a seat.

I tried taking weight adjusted doses of Jarrow Formula Methyl-B-12 for 18 months, with the hope that my PN was myelin sheath damage related, and might heal. But no healing has occurred. Now I just take the Methy B-12 as a supplement.

I've consulted with physical therapists and learned how to use a cane properly, and I have a cane. I really do think that if I needed assistance, I would prefer a walker. Right now I just don't walk any distance without someone's arm, or a grocery cart!

The one thing I know now is that at 71, and with my PN of unknown cause having remained the same for 4 years, it is unlikely that it will progress.

However, with new, strange diagnoses and conditions dropping on me every year (Primary Immune Deficiency Disorder and copper deficiency just to name two recent ones) I have no idea what the future brings.

I am optimistic about my IVIG treatments, now that I'm taking Medrol and the reaction to the IgG is negligible. I'm dutifully taking my copper supplements daily, and have reduced my proton pump inhibitor intake by half, hoping to increase absorption of both iron and copper.

So perhaps (if I'm not tempting fate too much) 2014 will be a bit more manageable and 'ordinary'. I so prefer calm, ordinary days.

Hugs, Elaine

I have been thinking about you.... Did you ever have the DNA MTHFR tested (DNA)???.... with the heart blockage and all, if you
have that mutation (which up to 40% are now thought to have in US)... you'd need methylfolate too to go along with the methylB12.

The myelin repair supplements, involve, methylB12, activated B6 called P5P, and methylfolate. Fish oil is needed to contribute the
fatty acids for the repair of the myelin sheath. People with the MTHFR mutation cannot activate or methylate B12 and folic acid properly.

If you search "myelin repair multiple sclerosis", you'll find an even longer list of suggested supplements, on a site specifically for MS patients.

It is unfortunate that you take that high dose Lipitor. Studies from MS research show that statins, block the nerve growth factors involved in myelin regeneration. At one time MS was thought to benefit from the anti-inflammatory aspects touted by Big Pharma. So there was a study using high dose Zocor, which is more lipophilic than Lipitor, and it was a dismal failure...the people were taken off, and the results led to the discovery of this unique damage by statins to prevent remyelination. So taking only the high dose B12 would not help you much, I don't think for your goals.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2671276/
While this is a very complex article, if you skip to the discussion, it is summarized there.

The FDA has already suggested that Zocor (simvastatin) no longer be used. Simvastatin is the most lipophilic of the statins, which means it penetrates the brain and nerves(which are fatty=lipids). And there are studies showing that very potent statins like Crestor are effective in very small infrequent doses!
This is just one example:
http://www.ncbi.nlm.nih.gov/pubmed/21784377
Why not do this for all if it is effective? That is what Dr. Jay Cohen MD recommends...in those who MUST have a statin. Get by the with lowest dose possible. I think you'd, enjoy his website, Elaine.

The word Axonal, just means that the axon of the nerve is damaged. It may be myelin damage if the axon is myelinated, or not. Only the C fibers that are afferent (going to the brain) in the periphery, are unmyelinated. That link I gave above here has drawings and explanations of the terms. All nerves have axons. The axon is the long sending portion of the nerve. The nerve body also has dendrites, which typically connect to axons.
This link shows that graphically:
http://en.wikipedia.org/wiki/Axon

and
http://faculty.washington.edu/chudler/cv.html
(afferent fibers)

This link has a graphic of the 4 types of afferent nerves showing the various fiber types. 3 of the types are variously myelinated, and the C-fibers are not.

Peroneal nerve damage below the knee, is often traumatic in nature. Crossing the legs alot will even cause it. But it can come from activities, like jumping and landing, or various exercises, or knee damage, surgery, or inflammation (which can compress the nerve behind the knee). If your damage is compressive in nature, or trauma induced in some way, this might explain why it has not spread. Toxic neuropathies, diabetes, autoimmune, vaccine injuries, often are all over the body. Trauma or compressive ones, often are more contained.

But the bottom line, is that PN is very complex, so much so that doctors don't even really understand it. CMT patients are often not even diagnosed properly, as Kitt often mentions in her posts.

So yes, many of us are skeptical. I've had PN in my hands and feet since I was about 30 (I am 67 now)...it crested during my pregnancy when I lost 80% of my hands -- revealed by an EMG in my 5th month. I could still do some things, but not hold a pen or lift a pot by the handle, or sew/crochet anymore. It did resolve mostly after my son was born, and it taught me a huge lesson! I still have to wear my wrist supports at night in bursts, I still have flares, like this summer when I sprained my right hand opening a tight jar), but for the most part my hands have not needed surgery. I also have osteoarthritis significantly and spurring in many joints), and also hereditary angioedema (a new diagnosis--following a major drug reaction this Feb 2013.)

I use my magnesium lotion faithfully now, with great appreciation and thank the powers that be, for it! What a small thing with a big PAY OFF! That is just an example of keeping up with stuff. A poster came here to tell us about it...so that is how I learned of its existence. After all these years, there is still hope... and the Morton Epsom lotion, is just one pay off for me and everyone else here!

OK, I admit this is half jokingly: http://well.blogs.nytimes.com/2013/1...ligament/?_r=0

I do understand where you come from though, and yes, as much as it may surprise you, I do believe 100% in the scientific method.

That doesn't mean that docs are always right or represent the ultimate "science". They are not. And the smart ones actually are acutely aware of it.

We currently know surprisingly little about how our brain works. So all I was trying to say is that telling people there's nothing that can be done might just not be giving the full picture, and might be doing their patients a disservice.

I believe that would be EMG/NCV testing. It would be interesting for you to find out the results. JMO