Possible PN
 

Hello friends,

I have posted before, just a brief reminder of my history.

I am 50 years old, my present profession is a teachers assistant for the mentally challenged, I live in WNY.

I drink coffee, two cups a day of caffeine, a glass of wine on occasion, I am approx 50 lbs overweight, and very small framed.

Migraines for 20 years, but do not take medication, only pain meds. as needed, foricet, aspirin, and Tylenol. One aspirin daily.

Raynauds Syndrome

Diagnosed 3 years ago with plantar Fasciitis (both feet) from walking the treadmill.

Arthritis, in ankles, (have broke both)

Have suffered sciatica nerve pain on and off for 5 years, but pain does go away after resting, and usually comes on if I aggravate it by lifting, gardening, or working out.

I also was diagnosed with carpal tunnel when I was pregnant, and when I dental assisted. The carpal tunnel went away after I had my daughter 23, years ago, and after I stopped dental assisting it also went away.

PN

Experienced slight numbness a few years ago in the toes on my left foot.

In the past 3 years the numbness with pain spread to the top of the left foot, and the lower backs of both my legs. Mainly a weird numbness, and pain when touched.

Broke left ankle in July of 2007, but did not worsen PN in left foot.

Tests performed.

MRI brain, slight change in white matter, diagnose due to migraines, first showed up 7 years ago, no change since.

EMG of left leg - 2007 , Dr. stated it showed I had a pinched nerve in lower back, although I have no pain in back?

MRI of spine - 2007 normal

Complete blood work, all normal, except high sed rates at times.


The past two weeks, my right foot has been symptomatic, but not with numbness, but SEVERE burning...It appears immediately at night after I lay down. Why does it burn only at nighttime after I lay down? During the day the top of my foot hurts tremendously.

My neurologist claims that I have a pinched nerve in my back, causing PN, and has suggested I have PT on a routine basis to help the condition. He prescribed neurontin. He states that NO foot therapies will help, such as warm or ice to feet, or PT to feet, since the problem is a pinched nerve in my back, is that true I wonder?

I am concerned about taking the medication and have not started it as yet, but now with the onset of this severe burning I am fearing that medication will be needed to carry on.

I have my first PT visit today. I also saw a Chiropractor that stated he may be able to help.

Since the EMG showed a pinched nerve, I am wondering if I should be confident of his diagnose. Its hard to believe that I have a pinched nerve with no spine injury, no back pain, and a completely normal MRI of back. It seems the pain would travel down my legs, can a pinched nerve in back cause pain ONLY IN FEET and lower legs, with out having pain in back or down legs...?

1. Could being overweight place pressure on nerves causing my PN?
2. Is it true that foot therapies won't help?
3. Can pinched nerve in spine not show up on MRI, but on a EMG?
4. Can pinched nerve in spine cause pain in feet and lower legs, with NO pain in back, and no pain traveling down legs?
5. Why does burning pain appear only at night after I lay down?
5. Do you think I should be confident with diagnose of pinched nerve causing my PN.

Are there Any other things I should be aware of, therapy advice, medication advice? Natural remedies?

I hope you folks can help me out with some of my questions.

Thank you VERY MUCH!

Any input is appreciated.

Patty

P.S. I am sorry for you that also suffer from PN, and am thankful for this forum. I hope that I can contribute occasionally some support to you as well.

I refer you to the stickies section. PN can be definitively diagnosed.

To answer your questions, being 50 pounds overweight will stress your body, and could put pressure on your nerves. One pound of weight puts 4 pounds of stress on your knees, just like it says in the commercial. However, any diet should be supervised, especially if you suspect PN, as nutritional deficiencies can exacerbate and even cause PN.

I am not sure what 'foot therapies' are being suggested, but a cause for PN should be looked for before any therapy is attempted... It is important to find out if you have PN and then what is causing the PN...and what kind of PN it is, as there are more than one kind of PN, some treatable, some not.

You have to try over the counter remedies out on your own, but, if some one is 'selling' or 'hawking' cures, be wary.

Orthotics are sometimes suggested to correct gait, which can cause all kinds of pain, all over, hips, back etc. Given you have had plantar fascitis, I would think that orthotics would have been suggested.

Stay off treadmills. If you want to exercise, walk on a flat surface, preferably one with a little give, or swim....after you are cleared by your physician.

A pinched nerve may not show on anything, as pinched nerve is a very lay person diagnosis....it isn't a clinical diagnosis. If you want PN ruled out, have an epidermal nerve fiber density test (skin biopsy) test. It is the only true way to find small fiber neuropathy when other tests are normal. (I sound like a preacher.)

PN, especially distal, burning, is worse at night.

You are right to question the diagnosis. Check out the LizaJane spread sheets and all the other resources in the stickies thread. Learn all you can about PN. Your neurologist is only as good as the facility he/she is affiliated with.

Good luck with your journey to diagnosis, and treatment.

Hello. and welcome here.
 

Much of your history is similar to mine. Severe Carpal Tunnel during pregnancy etc.

Mine turned out to be a thyroid problem, which masqueraded as normal for several years. But in reality I was hypo for a long time. After thyroid supplementation I had a vast improvement in the hands and esp. the feet.
I had such pain in my feet-- !!

People with hypothyroidism deposit a substance in the carpal and tarsal tunnels which pinches off the nerves. My blood work was only minor but a technicium scan revealed a damaged gland and I had a right sided goiter. The doctor said it was "idiopathic" meaning he didn't understand it.

So I'd get a very good doctor who is experienced in thyroid treatment.

Many of the newer treadmills have cushioning, but I still find them painful as well. The smaller newer ellipticals are much easier on the feet and hips.

Hi & welcome, i am wondering if you have had a 3 to 5 hour Glucose Tolerance test to check for Prediabetes.
good luck
Brian :)

Hi,

My name is Melody, and I'd also like to say "Welcome"

About the burning, have you tried Lidoderm Patches?

They are by prescription. My husband used to cut them up and wrap them around each toe before he went to bed. They say you can use up to 3 patches at a time. They contain 5% lidocaine solution in them. They are not small patches.

You can ask your doctor, and put one right on top of where your foot burns.

12 hours on and 12 hours off.

Ask your doctor.

I wish you well.

High Sed Rate
 

Have you had tests run for autoimmune causes of neuropathy? Such as Sjogren's Syndrome, Rheumatoid Arthritis, Anklyosing Spondylitis, etc. I'm thinking maybe a rheumatologist should be consulted also.

Billye

I just want to clarify my comments on treadmills...I used to own them and use them....they are good if you have no gait problems, have feeling in your feet, and can tolerate the 'shear' that happens when you are walking on a moving surface.

It is the moving surface that bothers me.

When you walk on a stationary surface, regardless of how hard it is, it is not moving the opposite way of your foot....think of it this way, a treadmill is actually sliding your shoe backwards from under your foot to some extent....the road, trail or sidewalk is not (altho they can be hard, unstable and uneven.)

You also have to walk at the pace of the treadmill, with no deviation or you can fall. If you have any gait issues that consistent movement of the treadmill, can force you into a gait that is not normal for you. A treadmill has to have medical rails or forget it. Good treadmills cost over $5000.

You do need weight bearing exercise, and cycling which I love, and swimming are not weight bearing....often however, I try to run in water, which is therapeutic. An elliptical, provided the stride is set well for you, will give you some weight bearing, not as much as walking, but you won't experience shear. I have an elliptical, but I think the stride is too far apart...hubby likes it, I don't.

That said, treadmills are more padded, and if you can find a stable but soft trail, such as a gravel hiking or biking trail, that is ideal. Be conscious of walking on roadways as they are crowned to drain, and one leg will hit before the other and that can cause imbalances and foot injuries....the leg nearest the road comes down faster, it as less far to travel...you are essentially walking on a slant. Not good. Your hips will even be affected by the further reach of the one on the side away from the road.

You have a lot of foot, ankle and back issues which actually can all be related....one titch off in a joint and the whole posture and gait is affected. Gait analysis, orthotics evaluation, could help you with every day pain and are a must if you plan on exercising.

I know there are a few posters who have a lot of knowledge in this area and can also add to your knowledge base.

It is very hard to find a physical therapist interested in working with PNers, or a personal trainer skilled enough to know how to work with PNers. My background is in nursing and clinical exercise science, but, I went to the school of hard knocks....figuring out how to exercise with PN...now that I know I have it, I understand why I got so many injuries when I thought I was 'healthy'.

Getting diagnosed with PN is like putting together a gigantic puzzle, and unfortunately, you are the one who has to do the work....docs may try, but even the best docs, don't know all of your experiences....and don't know all the areas your neuropathy can affect.

Get your neuropathy diagnosed, identified, the cause treated, and then work on the issues of learning to exercise with PN.

I personally found walking on any hard surface just pure agony, so i went to the local all weather swimming pool [ early in the morning when it was not busy ]and just walked up and down the lanes of the pool, i would swim a bit but mostly walk, non weight bearing exercise was ideal for me but we are not all the same, whatever suits the individual is the only way to go.

Brian :)

We all need weight bearing or our bodies go to pot...there are some very interesting studies on astronauts in space. Actually the Vanderbilt U program was designed to study the effects of zero gravity, and from there it evolved into one of the better Dysautonomia and Autonomic Centers. Our bodies are designed to be upright and, dysautonomics are loathe to be upright, as it is a constant struggle to keep the blood pressure up.

Walking on a treadmill with impaired sensation could eventually cause a shear injury or foot ulcer. If you have plantar fascitis and history of ankle fractures, it is obvious that there is a mechanical issue. I wouldn't exercise with that history until I saw a phsycial therapist and orthotist.

I have been thru cardiac stress tests several times and ended up black and blue from the tibias down due to the treadmill....and I used to use treadmills all the time before this got so bad.

I know one other member who got a foot ulcer from a treadmill.

Pool walking is better than no walking, as it is still weight bearing but much less so. Pool exercise is very good for people with neuropathy, and I hit the pool, three times per week. I mostly do laps but like you finish up with a few 'runs' around the pool.

Sorry to hear your feet are too sore to walk on. There are lots of new medications out there to use for burning feet. The antiseizure meds and cymbalta may work for the burning. If you have aching pain, there are lots of orthotics to redistribute weight, and opiates work better on the aching, in general. I hope you have been able to at least try some of these meds.

Disuse syndromes are the worst cause of pain and disability, and believe me, I know, as I am dealing with this issue due to not being upright enough due to spinal pain from shot thoracic discs that are inoperable, and severe hypotension....not to mention leg pain and foot drop. It hurts like #$%@ to walk, but I do it anyway, but it is my own fault for not being up enough, and not on my feet enough...or I see it as my own fault, anyway....maybe it would have gone this way anyway, as the course of the disease.

It is good to hear you are in the pool, and I hope you can get more relief from the pain with mechanical or medication routes. I am pretty emphatic about correcting mechanical and postural problems as as each joint malfunctions, the next one is affected until your whole body is a mess...and if you are a mess, it takes orthotics and braces to get you to the point that you can even work on core strength issues, to correct muscle imbalances...add to that myopathy, some of those imbalances must be permanently corrected with devices.

BTW, orthotics hurt really bad for a while, quite a while during the break in period, which is much longer for PNers....if you do get them, make sure they give you something for pain if it is too bad.

I think in general, the way PNers are treated for pain is in the dark ages. I hope that the medical community will see the light, soon.

Thanks Cyclelops, but i should clarify that i meant to say that i used the pool for exercise when my feet hurt to much to walk normally, i use to love walking for miles before the PN struck, so instead of becoming a very unhealthy couch potato i thought of the pool, which worked out a great way of exercising without any discomfort to my feet at all.

These days i am lucky enough to be able to walk the pavements again, the burning is 99% gone, thank god, i use to use 300mg Tramadol slow release x 2 times daily, but don't use it at all these days, only still use Endep which i am now considering to slowly go off that as well, keeping my fingers crossed :)
but getting back to the pool, i agree with you, if anyone is able to manage the pool it's a great way to exercise.
all the best
Brian :)

PN
 

Cyclelops, I am confused as I'm not quite sure what you mean that there is a break in period for AFO's. And that they are very painful. I realize there are many kinds of peripheral neuropathy. I have Charcot-Marie-Tooth disease (CMT for short). Perhaps you have heard of it. It is the most common "inherited" neurological disorder and is found worldwide. There are a number of types of it and sub types as well that they now have found. It is slowly progressive and causes deterioration of the peripheral nerves which control sensory information and muscle function of the foot/lower leg and the hand/forearm. And, of course there is much more.

At any rate, there is footdrop and lots of other things which do require at some point AFO's. I'm not quite there yet. However, from everything I have heard from people who have this and who wear AFO's, there should not be any pain. There would be adjustments that would have to be made to the AFO's. A person with CMT needs a brace person who understands CMT and how it affects the feet/legs.

Again, I do understand that there are many, many types of PN. I just wanted to bring this forth. There is, of course, much more information concerning CMT. I do appreciate your post and find it full of information. Thank you.

Kitt:)

No need for confusion, what you are hearing from me and the CMT folks is congruent.

I do have a brace person, called an orthotist. I know some PTs do them, but orthotists have a lot of knowledge and I found the orthotist to have the most options, and he really listened to me and gave me a good eval. An OT did my hand splints.

When you get orthotics, they give you a 'break in' schedule....(I think they disregard how much some PNers do hurt from this and get too aggressive with it and some folks give up on them....I do OK with their break in schedules).

They go something like, 'wear for 2 hours day one, 3 hours day two, etc'....that is when it is a bit painful....I don't feel my feet much, so I guess I have a bit of advantage there. My nerve fiber density from the knee down was below 2, 4 years ago, when I still felt things. I mostly get achey feet or cold feet if anything....I do not feel injuries.

When you change the foot position, you change the knee position, hip position and even the back....the foot, your gait, essentially affects places you would not expect.....often times, an orthotic will help a person with back pain for example.

Anyway, they don't have you wear the device all the time, in general, and even once broken in, such as the spinal one and the AFOs they don't want me wearing those all the time...the shoe ones they do....except I do go shoeless in the house some of the time, which they said is OK.

Your body is used to a certain gait, and when you get orthotics, you have to basically 'break them in'. I got my first ones, after I had a medial tibial plateau fracture from gait abnormalities...and it didn't heal for a year, and ended up needing an electromagnetic coil. This was before they suspected neuropathy.

I have both spinal, hand, thumb and shoe ones, and I will be getting AFOs as well, as I have mild foot drop, which is fairly recent. (I am 55, so not a spring chicken and my foot drop comes on after about walking 400-500 meters...I also have myopathy, but up in the bicep...I likely have it elsewhere but that is where they did the biopsy.)

I also have a night AFO, as my feet plantarflex at night and that causes a lot of dorsiflexor pain....I can't get my foot back in the 'L' shape without a lot of pain...so they don't want the foot plantar flexing at all at night. That will be hard to get used to, sleeping with something on my feet. I do have to take Baclofen and diazepam to manage spasms, and we are still working on the right dose.

I have not yet been thru the CMT gene testing, but the doc is leaning in that direction for diagnosis. Right now he is just calling it an autosomal dominant hereditary neuropathy and/or anterior horn cell disease. They are finding new gene loci for HN and or CMT whichever it gets called in each case, all the time, so it is a matter of when to do it, and how much it will cost and who will pay. I will know more about it in a few months. I think right now, they can identify roughly 20 genetic loci for CMT, and they keep adding new ones all the time. I have an axonal neuropathy. I know my doc is not real big into testing for the genes...I would like to know, personally, as I have kids, several with symptoms...but they are grown, and won't get tested, as they have me to get it done. My doc feels we can wait for more symptoms to arise and then nail down the gene loci better and not cost a fortune testing for stuff that is not at all in the ball park.

I will be getting my second spinal orthotic. The spine issue is more difficult to pin down as I was hit head on by a truck going 55mph, so, I have several calcified herniated discs....we do have a kid with scoliosis, so it is hard to say if my spine issues are genetic or from a good whack.

I also have hand ones for sleep and daytime thumb splints, that really do help, altho they interfere with things....and people who go to shake your hand, kinda get taken back with what is on your hand if they don't see it first...LOL, I had someone recoil a while back and it was the first time it happened....it was no big deal once they saw it was just a plastic thingie. Kinda surprised me as I just didn't think about it, as I didnt really remember they were on or that some one would think they are odd.

My old orthotics, 3 years old, are no longer correct, as my gait changed, again...usually insurance covers 2 pairs of shoe orthotics every two years...I guess mine just changed that to one pair, LOL, big surprise. With progressive neuropathy, your body changes, so your orthotics have to change. I am getting carbon fiber AFOs with a stay in the back due to my degree of hyperpronation...orthotist was afraid I would break a medial stay and that costs $$$. There are all kinds of AFOs, so it depends on what your issues are....that said, they are pricey.

AFOs and the spinal one, they do not pay for like the shoe ones, which are 'relatively' cheap....these I think I am to make due with for quite a while altho I am sure they can be adjusted?

Anyway, they hurt during break in, and this will be my third break in....once broken in and you get used to the new positioning, it should be fine, and they should not hurt....until your body changes again and you get to go thru it again. I can't stand to walk any distance, with out my orthotics. I am supposed to wear stockinette under my hand and thumb ones...but I get cheap and just cut up old thin socks. Oh, I can only wear one hand splint at night, I alternate...you can't stand to wake up and be all tied up. The night ones for my hands keep my wrists from bending inward. (I don't know if I explained that very well....) They are not like carpal tunnel ones, but custom molded plastic that also keep fingers from curling under.

Also, it is important for orthotics not to rub on skin...ulcers in PN are nasty to heal, so it is important to let the PT or orthotist know if anything doesn't go well during 'break in'. That is what people with CMT refer to when they say they should not hurt, and they should NOT hurt, past the initial break in, once your gait is adjusted and you are used to the new positioning. If they do hurt, or any skin is being rubbed off....go right back to the orthotist...right away, so you don't get nailed for paying for a bad fit! They cost a fortune.

It is also important, in my opinion and my orthotists opinion, to try to go without, so all muscle strength is not lost. Hope that clears things up.

Since you have a diagnosis of CMT, can I ask a few questions? (We don't have many CMTers or hereditary PNers here) I do read the CMT forums, however, can't find a few answers to questions.....I know these are kind of personal, but.... Did you ever have dysmenorrhea and if you had pregnancies, did you have issues with labor and delivery, and also how do you do with general anesthesia? Have you had any issues with drug intolerances, and which ones? If that is too personal, I understand. Thanks.

There is a trial
 

going on using Vit C in CMT patients... I'd ask your neuro about it.

http://lpi.oregonstate.edu/ss06/charcotmarietooth.html

and this older one:

Hi Cyclelops,

I must have had brain fog as I know that it is an orthotist. But some days a person can't think straight. Sorry for that.

I do know that some people who get AFO's do not have a problem at all but others do and have to go and get them tweaked. And, there is a breaking in period so to speak. I have no idea what will happen when the time comes for me. However, I do know it will be a big difference and of course my gait will be corrected as well as lots of other spots.

There is DNA blood testing thru http://www.athenadiagnostics.com They do have help available for the cost as well as I believe the MDA does too. And, of course a person's insurance might help out depending on what type of coverage you have. I'm sure you are aware of all of this. And, I know that if you have to be tested for all it will cost lots.

Dr. Shy, from Wayne State University, told our group last fall that they have testing for 10, there are 33 genes discovered for CMT and there are 44 that are not discovered as yet. He is an expert on CMT and so is his team there. A good place to go if one can make it.

I'm sure you are aware that if they should find the type of CMT that you may have that that would be what is in your family. So your children would not need testing. That could also enter into insurance problems for someone trying to obtain insurance. If a person is lucky enough to work for a large company, then they would just be accepted. This would be true for any pre-existing condition. So it can be a concern.

Again, thank you so much for your post. I do appreciate it.

Kitt:)

Hi Again,

Yes, it is too bad that there aren't more CMTers on here. It is nice, so to speak, when they do come on.

To try and answer your questions, I had no issues with labor and delivery. As far as anesthetics, you would want to stay away from Suxamethonium (Anectine). It is a muscle relaxant and it causes the release of potassium icons (K+) from the muscle tissues into the blood. With normal people this doesn't really bother. But a person with a NMD may normally leak K+ so then it would be a further increase in those levels. This could lead to abnormal heart rhythums. There is a test that can be done preoperative to check the K+. Most of us CMTers are pretty relaxed anyway so no need for that type of drug. And there are lots of others out there now.

You would not want a spinal or epidural either, especially with CMT Type 1's as you could have enlarged nerves and it would be harder to get the needle in the right spot. Your anesthesiologist should be aware of this. These enlarged nerves are called "onion bulbs".

I've only had an issue with a sulpha drug. Otherwise, I have not had any trouble but then I do not take any medication unless I absolutely have to. Most of the time I just live with pain. At some point, that certainly could change. But, no issues there.

I should mention that CMT symptoms can come on when you are young, old, or in-between. Or they may never be that evident but yet the person can pass CMT on. Symptoms vary greatly even within the same family. It comes from my Mom's side. I had my children long before there were any evident symptoms (of course there were no gene tests then and so didn't know that I had inherited it either). Mine showed up much later in life. My Mom had her children long before her symptoms were evident and the same with her father. My Mom's brother's symptoms were there when he was 11. So there is just no way of telling how a person will end up at all. And we have to remember that there are many types out there but the Type 1's and 2's usually have that 50/50% chance for "each" child to inherit.

By the way, with the exception of Type 1X, which is inherited through the X Chromosome, CMT Type 1 is inherited in an autosomal dominant pattern. Type 2 represents axonal forms that are dominantly inherited and they make up about 1/3 of all dominant CMT cases.

Hope this helps some and as I say, you seem very knowledgeable and probably know a lot of this anyway. Thank you again. I do appreciate it.

Kitt:)

Hi,

A person with CMT should never take a mega dose of Vitamin C. Some do thinking that it will help them.

There are three High Dose Ascorbic Acid trials going on in the United States. They are at Wayne State University, Detroit, MI, University of Rochester, Rochester, NY, and Johns Hopkins University, Baltimore, MD

There was/is strict criteria for these trials. For example, you could not have been taking very large doses of Vitamin C for a year or more, you had to be confirmed as type 1A as that is what these trials are for. And there is much more criteria as well. Some patients were/are being given a placebo and the others the Vitamin C. They do not know what they are getting.

I have heard that in other places, the patients seemed to stay where they were with their symptoms but as soon as they were off the doses, they went back to like you hadn't taken it at all. Others didn't do the same.

At any rate, it would be nice to find a cure/treatment but it appears to be a long way off. Dr. Shy did mention perhaps in 10 years I believe. At least our children/grandchildren might benefit one day. But, CMT is so very complicated. Thankfully though, there is much research of all kinds being done.

Thank you for your information.

Kitt:)

Hi. I don't have much to add just a hello and welcome to the boards.

I read up on the Wayne State program, and am aware of the Athena Labs.

I do know my issues are axonal, at least that is what my nerve biopsy indicates, so it seems like I would fall into CMT 2, but, I don't know...I look at CMT 1 and at times feel like I fit more in that category.

I had spinals for 3 C-sections...the general didn't work on my first one! I had uterine atony...water broke but no labor....then they induced and after 12 hours, no progression...back then when you had one section, any more were done as sections. I also had horrible dysmenorrhea as a young woman and no real pathology. One daughter has it but now we know NSAIDS work, so she has those. I had RLS as a kid, and one daughter, my sister and one cousin do too. My dad and his 3 brothers and dad all died between ages 43-68, and one family of 3 brothers, all second cousins died between 40-50 from sudden cardiacs. Something is going on in one branch of the family tree. I haven't been in touch with many cousins, and hereditary disease is not a topic that my extended family seems to want to approach. I do know one cousin had a child with hip dysplasia, which is occurs with CMT.

I can't take any SSRIs, any antidopimergics, any anticholinergics...it has been hideous trying to knock me out or sedate me. I had a uterine ablation in 2003, and they used a general, before I knew I had neuropathy, and I felt so bad, I went back and told them I thought I had a stroke....I swear I never recovered after that procedure! I had a total bottom out of my blood pressure and heart rate post op and they had to use meds to speed up my heart and raise my blood pressure...this was as they were walking me out of day surgery after I told them I was sick! They had more people in there it was almost a code. I wish medical professionals (and I am one) would listen when people say, 'I'm sick---don't take out that IV'. Boy, I never saw so many white faced nurses after 5 tries and still no IV back in...after I told them...don't pull it....leave me here...I am too sick to go home! BP was 70/40 and pulse was 40.

A year later I had PN diagnosed. It was diagnosed as sensory and autonomic...I just had a muscle biopsy that indictes myopathy as well...so it must also be motor, in my way of thinking? So if it is a CMT it encompasses all three kinds. It seems that autonomic forms of CMT are only recently being recognized. They may have always been there. Who knows. I know some groups of Scandinavians have higher rates of CMT and I am prehistorically northcentral Swedish on one branch.

Medication has been a huge issue for me.

I did tell my docs about Athena labs and the Wayne State program...I go to a research center which has done just about every test available except the genetic ones.....they are looking at how best to deal with the gene issues now. I have to pay some money towards my orthotics and when this is taken care of, then I can take on the share I will likely pay for Athena Labs. I guess the most you pay is 20% out of pocket if insurance won't cover? There is no need to repeat all the testing, biopsies, EMG etc, but Wayne State could use my info. I have a well document genealogy and a large cohort here that if it is an identified CMT, it would be of interest to them. Plus we are in the midwest, not far away.

I would like to know what I have, so my kids know before they have kids. A few of them are not reliably employed with stable insurance, and until every one is employed, I am not pushing them to get the diagnosis...one has definte symptoms similar to mine but far less severe, and the other has scoliosis among other neuro issues. A third one has neuro issues too, and some odd ones, like I have. One seems unaffected, at this time, but she crawled on the back of her wrists as a baby! Not on the palms, but the back of her wrists. I had her evaled for CP, never thinking it was CMT. She is in her mid 20's now and seemingly very healthy.

Thanks for the info and the support. Also it seems to me, that CMT is actually hereditary PN and visa versa....there seem to be several diagnoses for the same disease??

I am taking a general vitamin and sublingual B-12. I usually take calcium but my dog ate my viactiv! He is OK (dumb dog eats anything and survives). I suppose I should take magnesium as right now, I can't eat leafy greens. I am having esophageal issues which could be related to PN or a totally separate problem. My Vit. D level is normal.

Hi,

20% sounds about right that you would have to pay at Athena Diagnostics. Hopefully, if/when you get to the DNA blood testing, they can find out if you do indeed have CMT, one which they can test for.

This has been a long row to hoe for you. So many things going on. And there sure seems to be trouble somewhere in the branch of the family dying early with cardiac problems.

I wish you well and hope that you can get some answers to your questions. It would also shed some light for your children. Again, thanks so very much for your reply.

Kitt:)

Just jumped back on to say Athena Diagnostics is who my Neurologist used (along with her own testing) when testing began for PN.

Just a little addition--
 

--I've found that many physicians, even some neurologists, think that hereditary neuropathy and Charcot-Marie-Tooth are synonymous, but in reality there are numerous variation of hereditary neuropathies and myopathies, of which CMT in its various forms is only one permuatation (although it does seem to be the most common one, and more understood than many of the others).

There are variants of CMT, there are numerous kinds of hereditary sensory and autonomic neuropathies (HSAN), and a batch of hereditary motor/sensory neuropathies that are not under the CMT rubric, as well as numerous hereditary neuromuscular syndromes without widespread sensory involvement. If one looks at the ever-expanding listings at the Washington University Neuromuscular website:

http://neuromuscular.wustl.edu/time/hmsn.html
http://neuromuscular.wustl.edu/time/hsn.htm
http://neuromuscular.wustl.edu/time/hsn.htm

one could be excused for thinking that each individual case is a new entity unto him/herself.

The likelihood is that as the human genome continues to be studied, even more of these conditions will be identified, and many will be associated with effects and consequences beyond the neuromuscular . . .

Glenn, I have to admit, i wonder how some of these folks get diagnosed...it says, incidence of 'One' or 'two siblings from Bulgaria of consagnuinous parentage', or 'one family from Azerbajan'. LOL....is it a disease if one person and one person only manifests the mutation?? I suppose if some one is interested in the mutation, it is, but is it likely to be duplicated?? Hmm.

I too, am perplexed at the ever growing list of misplaced or duplicated AGTC's, and I think that is what my doc to a great extent is saying...this will cost tens of thousands of dollars right now....in a few years, the disease process, may direct him more, as to which tests are ball park, and which ones we can rule out based on symptoms.

Athena Labs appears to be at the forefront of CMT testing, and would be the likley choice.

CMT, and HNs are seeming to overlap, and even the myopathies are now getting tossed in there as a few have C fiber degeneration....the more we learn the more there is to know.

To think that PN was once simple...but then again thousands if not millions went undiagnosed due to a normal EMG! Oh wait, that still happens!:eek:

Thank you
 

Thanks everyone for you replies.

I have had numerous blood tests done for many things, Glucose, thyroid, auto immune. All normal.

About 12 years ago, I got very ill with a strange virus, I started losing pigment in my skin, (mother and sister also have same disorder) my hair got thinner, I got very tired, my sed rate was high and I suffered a strange arthritis. Slowly I improved, felt better, but since have had many strange aliments. My sister was diagnosed with Lupus, my mother 83, has has brittle diabetes, but otherwise healthy. My doctor states that my ANA is normal levels so I don't have Lupus.

Now, the PN, its really scary, and I feel lost seeing doctors, and so many different opinions.

I am very light sensitive, sound sensitive at times too, I get lightheaded often, and just a over all feeling of not feeling good...!

So, needless to say, doctors just state that they do not know what is wrong with me, and lead me to believe that I suffer anxiety.

Feeling depressed, and frustereated. And scared too!

Patty