Result from Neuro today
 

Been diagnosed with Peripheral sensory polyneuropathy today.

He did a nerve test with sticky things on my feet and up my leg.
Everything was pretty much normal, except a small change in my left foot which doesn't respond as well to the electrical signals. Around my feet around. He measure up further my leg but said everything was fine.

He wrote all the numbers down and showed me, and said it isn't much to worry about. Husband asked what is the worse case scenario, he said when l am old in a nursing home l may get unsteady on my feet and lose a bit of balance and have to work with a cane or some walking aid. Also said l may have burning hot feet here and there and sometimes stabbing pains. He said he hasn't seen that many people with PN with stabbing pains, mainly burning, tingling and restless let syndrome. All of which l have already had. He said there is medication, but he wouldn't recommend them as they have loads of side effects. He did give me a supplement to take, Cayenne. Said all the other supplements are a waste of time.
He said he doubts drinking has anything to do with it. I would have to be a heavy enough drinker to have the shakes when l stop drinking. He also said, l won't die from it, and l won't end up in a wheel chair and he has seen younger people than have this. As young as 12 years old.

I left his room, still with so many questions. One of them being, if l have this now, does this mean l will be unsteady at an early age? This worries me as l want to enjoy my life. Also, how does he know it isn't Auto NP? Are there any tests to rule this out? Also, is it normal for the PN symptoms to come and go? Since he has seen many patients l thought his experience would be useful in answering my questions. I mean after all he is the expert and deals with these kinds of things each day. I just felt rushed as usual.

Do you think its wise to get a copy of the nerve results? Are there any other tests he could have done?

I also bought my kneck X-Ray in he said to not have x-rays anymore as they are really bad for our health. This has scared me, as l have already had about 3-4 in my life over my body. He said MRI and Ultra sound is fine.
He said my x-ray look fine and my PN has nothing to do with it.

I now have to get my head around all this, l just want to live happy and healthy without pain.


He said if l wanted to in a few years l could have another test to see if its progressing. Is this to see at what rate its progressing?

Sue

Your experience is about typical. Not one smidge of effort to find out what is happening to you. Typical.

Surely he does not think you have CMT?
http://emedicine.medscape.com/articl...overview#a0101
This presents in children:
PN in twelve year olds... that is appalling if not hereditary.
(not everyone has hereditary PN --as a 12 yr old might have)
Hereditary PN is not the most common cause, but only one of many.

Looks like you have a "winner" there, (not).

No he does not think l have CNT. He doesn't,t think l.ve got much at all

Now want do l do for here in? What should l do ?

A question, have you heard of cayenne supplement?

Also, do you know if this kind of neuropathy gives hot hands as well? Should he have done a nerve test on my hands as well, as l suffer from heart palms?

Sue:(

What was your test called?

Sensory PNs don't usually show up in electrical testing.

To compare you to a 12 yr old (who most likely has CMT) is pretty stupid.

I certainly wouldn't go back to him.

You can look up cayenne on Google. But if you have a nightshade intolerance cayenne would set you off worse as it is a nightshade.

Usually PN is a result of another disease no? Diabetes, MS, lupus ??? im confused. Can PN be a disease all by itself? I thought it was a symptom.

I would write a list of questions, go back to MD and ask. If he dismisses you, seek a new one. :hug:

yes, medicines have side effects, but to leave you numb, buzzing, and worried wasnt fair. :hug:

Some PN is primary. Hereditary types, poisoning etc, nutrient deficiency.

Some is secondary, to something else. Hypothyroidism, autoimmune disease, diabetes.

Interesting article.

http://www.ninds.nih.gov/disorders/p...neuropathy.htm

And another.

http://medical-dictionary.thefreedic...ory+neuropathy

Some are inherited and some are acquired.

You could possibly benefit in seeing a neurologist who knows CMT. There are many other tests to rule that in or out. No one not even a doctor can tell you how you will end up. Your family history should be taken into consideration as well. Even then (your father or your mother) do not have to have symptoms that are evident. Sometimes CMT can be caused by a "rare" mutation. CMT can also be misdiagnosed such as having polio, Fredericks Ataxia, and a host of other diseases.

If indeed you did have CMT, and there are MANY types of it, symptoms could be evident when you are young, old or in-between. There is no cure/treatment for any type of CMT at this time. A person has to deal with the symptoms.

At the top of this forum check out PN Tips, Resources, Supplements and Other Treatments.

I am not really sure what the test is called. But he put these stickies things around my ankles and half way up my calf and put like electrical impulses and see if my toes were react, and then measure how far up the leg, whilst his nurse was recording them on computer.
He said l have very minor nerve damage, only slightly below the average in one foot and the other foot is normal on one portion but slightly out on the other. So he seemed to say it was all very mild.
He also got me to walk in a straight line barefoot and to close my eyes and stand still to see if l have any wobbliness. He people with PN in older years, tend to walk with there feet going outwards and unsteady on there feet, lose balance and may need a walking aid, but he said not to worry of me as l will be old in a nursing home by the time that happens.

He said NP is a degenerative condition. I suppose that means its normal part of ageing. My husband ate that up straight away. For my husband that was all sorted. He said to me, see that is normal part of getting older. I just can't except that. Its like my husband is already moving on. I don't' want him to worry about me, but l would like to just have his support and understanding at a time like this. He is normally pretty good, but l don't think he can handle this one.
We had a few nasty words with each other yesterday after the Neuro appointment. Husband just said to me, your not dying. Live you life now and don't think about the future, l know his right, but hard to do. The Neuro, didn't really give me much indication of how this is going to pan out for me, according to what he has experience in his profession. I just want to know what he has seen in his life. He just said, everyone is different. Well that helps heaps.

Sue

So you don't know much?

You don't know if you have motor damage? Or only sensory damage? Or even damage at all?

I'd get a copy of that report.

People with early onset, and you are very very early.... may have some self limiting problem. Meaning it might be an environmental thing, and pass. (viral infections for example).

I'd keep a log and live as clean and healthy as you can. See what develops in 6mos.

New shoes, activities that do not stress the feet and legs, as well as clean living... and you might see positive results.

The neuro placed conducting nodes on different sections of my foot and leg, sending current to make my nerves sensitive and reflex to create a reflex to it.
Depending on where the nodes were placed and checking the latency of my reflex reaction, they were able to determine that my reaction time was slower on my left foot than my right foot and my average reactions from ankle to foot, we're slower than average for both feet. Reactions from mid to upper leg, down to the foot were considered normal. This is the data they have used to diagnose me with sensory poly NP. Should l get a second opion, or would this conclude to be an accurate test? Current placed on my leg was in the range micro amps, latencies and variations in reflex feed were recorded in milliseconds.



My husband has helped me describe this hopefully better than l have.

Sue

Hi Sue,, I imagine neurologists cover a pretty broad area and PN is a specialty. I wonder if it helps seeing someone who specializes or has expertise in PN. Will be interesting how I go with my neuro today, this has been really messing with my head.

I may book in with neuro that you mentioned, where did you hear about her?

Steve

??
 

Thanks very useful as I'm going to see a neuro for the first time today.

Does this suggest that the nerve test he conducted isn,t the right one to be able to pick up sensory neuropathy?

Sue

usually an electromyography is done in conduction with a nerve conduction study for the area affected.

The nerve conduction study and electromyography (EMG)--
 

--is designed to measure the responses of larger-caliber, myelinated sensory and motor nerves. All motor nerves are myelinated, and so are the sensory nerves that sense position, vibration, and mechanical touch.

There are UNmyelinated sensory nerves--the small fiber ones--that sense temperature and pain. These are too small to be measured by standard nerve conduction study techniques. So one could have a small-fiber sensory syndrome and be symptomatic and still show "normal" on a nerve conduction study. Such people tend to have pain and paratheses ("abnormal sensations without source") as paramount symptoms. But one can have a sensory syndrome of the larger fibers that disrupts the other sensory modalities (and often there are symptoms of numbness, or prickles, or jolts, or tingles). Or these can be combined.

The results of the study seems to show that at least in some anatomical areas you've having a problem with the larger sensory nerves, which is consistent with a disruption to the myelin sheathing (myelin is the fatty covering of large nerves that helps sustain and amplify signal impulses).

Damaged myelin comes from:

toxins
autoimmune disease (the body attacking itself)
multiple sclerosis
vaccine injury

Here is a link explaining it.
http://en.wikipedia.org/wiki/Myelin

I can't see the link?

You post that you can walk in a straight line barefoot and close your eyes and stand still and no wobbliness. I could at one time as well.

I've seen people walking like a duck (feet outwards) and they are not old and do not have any trouble as far as balance. And I've seen the same with older people.

I am unsteady due to muscle loss from CMT. But I do not, and never have, been duck walking. I am not young either. Just my 2 cents. And yes, everyone is different. I am certainly not saying that you have CMT. That remains to be found out. I hope you get some answers.

Just adding that Multiple Sclerosis is an autoimmune disease (body attacking itself) for the most part. It is in the CNS (Central Nervous System) brain and spinal cord.

Guillian Barre is another one that affects the myelin. The myelin does come back. But a friend of ours was really, really bad and never came back the same. Another friend was not so bad and so came back to normal. Just depends.

Damaged myelin is also seen in syndromes such as CMT which is of the PNS (Peripheral Nervous System) which is outside the CNS. It does not involve the brain and spinal cord.

Muscular Dystrophy is in the CNS. People are born with diseased nerves. With CMT we are born with healthy nerves and it won't be prevalent unless we inherit the gene.

http://www.lindacrabtree.com/cmt/bas..._article2.html

All PN is not degenerative. The hereditary types are, but others can be managed quite well. Some toxin induced PNs can be permanent if nerve cells die...those cannot regenerate then if they are dead.
http://en.wikipedia.org/wiki/Peripheral_nerve_injury

If you don't manage PN however, and make the changes your nerves are asking for, and ignore it instead, it will progress.

People who have been poisoned with arsenic even can get somewhat better depending on the amount of the poison.
Some poisons like Thallium however are permanent and often fatal. (both cause severe PN).

Peripheral nerves can regenerate. Even doctors are taught this.
So telling you will degenerate is not fair and in fact very alarming. You have no proof at all at this point that you have a genetic form of PN... like CMT.
http://en.wikipedia.org/wiki/Peripheral_nerve_injury

Let me tell you this little story. My doctor reacted to my latest request for another B12 test, saying that "oral B12 does not work"... but you can have the test anyway. So when my results came back very high, she was embarrassed. She like most doctors, just doesn't know everything. I was testing out the new Puritan's Pride methylB12, and getting ready for another metformin trial, so I really wanted to know if the Puritan's works. And I can say, for me it is labeled correctly. No cheating on ingredients inspite of the low affordable price.

So will you deteriorate, Shezian? Don't worry about it yet.

the bottom line is that nobody knows how your PN will progress, if you will progress or if you will get better. everyone is different. different causes, different genetics, different metabolism, different healing capabilities. for anyone to predict would be a guess at best and uninformed arrogance at worst.
the best thing you could do for yourself would be to provide yourself the conditions that would best lead to the regeneration of your nerves. exercize, proper nutrition, eating more than once a day, supplements, cutting out alcohol totally for a long period of time to see if that helps, keeping track of what is happening with your pn on some kind of a log or calender you can write on. good days, bad days, if something is helping or hurting and for how long it is helping, when you started taking something etc. this way you can look back over a long period of time and see which direction you are heading in.

there are people who have posted here who have gotten better. there are people who have improved somewhat. there are people who have stayed the same basically and there are people who have gotten worse. these cover all ages from pre teen through 80. there is really just no telling how PN is going to play out.

All true except for CMT. It is progressive no matter what you do. It does not get better and will not get better. However, in saying that, no one not even a doctor can predict how you will end up. CMTers symptoms are not the same. Symptoms vary greatly even within the same family.

As I said, CMT does progress and there is no cure/treatment for any of the types at the present time. And there are MANY types of it. Much research is being done but I doubt that I will see anything, short of a miracle, in my lifetime.

Even the doctors/neurologists who know CMT say that even with some kind of treatment a person would possibly just stay the same as they are now. That would be O.K. too. But a person more than likely would not get better at this stage of the game.

I wonder how much medication would cost and who is going to pay for it? Who will be able to afford it? They never seem to mention that at this point. It will surely be interesting if I live to see that day.

Just curious how do they diagnose CMT?

Also, kitt, what makes you think l have this?

Nobody has suggested this.

Sue

I gave you a link that even had photos on it. Explained it very well there.

I will share a story about my bestfriend. Hopefully, it will inspire some....
She was diagnosed of Breast Cancer, Stage 4 in July 2011. It has metastasized to her lymph nodes, bones and lungs. As all oncologists are trained, chemo was the first line of treatment. She had the chemo, but after the first session, she decided her body cannot take it. Her doctor told her in strong words that if she does not go through the chemo, she will only live 6 months. It was very devastating hearing this from her doctor. After praying for guidance and research, she went for Homeopathy.

To make a long story short, she had her pet scan in March and her cancer is 90% gone! Thank God! She still continues her homeopathic treatment and hopefully, she will be totally free of cancer soon.

Mrs.D and Echoes wrote it very well, doctors do not know everything and nobody knows how our PN will progress.

Keeping your spirits high can sometimes be difficult when you are pain. I, too, am struggling on this on some days, but I keep myself busy and yes, I pray.

If you develop severe PN symptoms and are relatively young, CMT or hereditary neuropathy is always a possibility. If your symptoms are truly sudden in onset as you describe I think this is less likely, but more likely to be a reaction to something and therefore treatable, but largely on your own. You will have to do the detective work and find the cause in the absence of medical testing. We can only suggest possibilities, which you have to investigate and decide how and if they apply. Supplements, nutrition, and lifestyle are all keys to treatment, but nothing is harder to apply. I get to relax and just take a pain pill for my CMT because it is not treatable, but I also get to install grab bars and try to figure out how to live in a three story house when going up steps is becoming more and more difficult and painful. I would rather try to get better, even if it were a trial and error process.
If you did not display an awkward gait, uncoordination, accident proneness, lack of athletic ability in running, skating, balance, etc. as a child, it is unlikely that you have CMT. Do not always fasten on the worst diagnosis, not that this is the worst, only that it is progressive and many other types are not.

Hi. I have to disagree with what you said in your last paragraph. You do not have to have had all or any of those symtoms as a child. I did anything and everything for a long long time. CMT symptoms can become evident when you are young, old, or in-between. Or they might never be that evident. Symptoms can be chalked up to some other disease/syndrome.

My symptoms were not evident until around age 50. The symptoms were not bad at all and hardly noticeable until around age 64 when CMT started to limit what I did. Symptoms of CMT vary greatly even within the same family and that is true in my family. As I said, I did anything and everything for a long long time. Some back in the family had symptoms at age 11 and others in their 30's and others much later as I have experienced.

Your symptoms must have become evident when you were a child. I believe that's what I have read.

Hi,

First off, I do not "think" that you have CMT. I am in no position to say that. Sorry if you were under the impression that I think that you do. I was, and am, giving you ideas, resources, etc. so that you might be able to rule it in or out. There are so very many types of PN out there. CMT is just one possibility as others have said.

Under "PN Tips, Resources, Supplements and Other Treatments" at the top of the forum you will find much information concerning CMT and there are sites to click on and read about it including diagnosing it.

Hope you find an answer as to what you have.

It appears to me that the doctor who did the tests, told Shezian in a way that suggests a hereditary factor that cannot be influenced. Didn't say the words exactly, but implied it.

Most early symptoms of PN can be self limiting, and go away even because they are reactions to something in the environment or reactions to a viral illness.

I think if she continues further testing for autoimmune disease is warranted, and consideration of gluten as a trigger should be made.

You are right, of course, Kitt. CMT can present in lots of ways. I should have phrased my reply more carefully. My childhood clumsiness was very significant to the neurologists in determining a hereditary neuropathic process. At the time I was first diagnosed I didn't mention the symptoms on my father's side since we have never been in contact. My half-sister wore leg braces from childhood, but I didn't make the connection at the time, and my father and his sister may have had symptoms as well. Mine is axonal, type 2, so earlier onset than some.
I have just turned 50 and have had considerable deterioration in the past 4 years. Numbness first appeared about 15 years ago, progression was very slow at first, past my knees now with pins and needles in my thighs and hips.

I only meant to say that a sudden and serious onset like Shezian's is probably not CMT. I haven't read anything in her posts that would seem to support a diagnosis.

Just wanted to say after reading all your responses. Is that l have for about 5-6 years been experiencing numbing of my right big toe. It used to come and go, a few times per year, lasting for a few weeks. I never thought much of it, and just ignored it. Now l am wondering if it is related to PN?

Hopefully it will not get too much worse than what is is now. It has all settled now, l just have painful feet, mainly on top when l walk or run, and standing can be painful on my legs.
If it stays this way, l can deal with it easy. But knowing that it all may have started in my right toe, shows it may very well be a progressive PN.

Would l be right in saying this?

Sue

Yes, this could easily be a progression from the numbness in your toe, at least in my experience. The pain on the tops of your feet and the pain in your legs would all be consistent with my progression. A shortening and deterioration of the muscles in the back of your ankles and legs can cause that type of pain. How are your muscles? Can you easily do a seated forward bend or are your hamstrings and Achilles tendons unusually tight?

mine started with numbness in the big toes of both feet at the same time.

Yes l am able to bend forward from sitting position.
Yes, the back of my legs feel a bit tight. Geee, l hope this isn't going to progress fast. I have a family to raise first!! Hopefully l can do it without a cane or wheelchair.

Sue

How old is your youngest? I still have children at home. My youngest is 13 but has special needs, so requires considerable attention.

My twin girls are 10 years old.

Sue:)

Sue, did you're neurologist test your feet with a tuning fork?

Yes he did l think at the initial appointment when l went in to see him, for my floatiness, spaced out feeling. That was 6 months ago.


He then saw l had early signs of NP, but had chosen to not tell me until just recently.

Not sure why he didn't tell me then.

Sue

Yes, he certainly should have told you so you could start supplements and food changes EARLY.