Peripheral neuropathy?
 

Hi,
I am 18 years old and female. I am a runner (6X per week 3 miles each time) and last fall I the initial symptom of flashes in my vision after runs. Then i noticed in winter i was tripping and on small imperfections in sidewalks or nothing at all. I would also skid on flat surfaces. Then is spring i would have tingling like water dripping/pricking going up my legs (usually when it was warm out). I also occasionally have sensitivity to touch of my clothing and dizziness upon standing. I have been to a neurologist and his first diagnosis was peripheral neuropathy (which my grandmother has - idiopathic). I had an MRI which ruled out MS. Blood work which ruled out vitamin deficiencies. Most recently i had an EMG which came back ... normal....does this mean that i dont have peripheral neuropathy? what else could cause all of this?

thanks so much!

Welcome to NeuroTalk:

You will want to double check with your doctor, for the exact level of B12 you tested at. Lab ranges in US are low, and if you are below the new standard cut off of 400, you could have NOT normal results. Some doctors don't know this yet.

That feeling of water going down the legs, is also present when there is compression in the spine somewhere or elsewhere. I had that symptom for my MP (meralgia paresthetica), before it became very painful. MP is a compression of the lateral femoral sensory nerve. Mine was from a C-section surgery. MP can come from wearing too tight jeans, or from surgery or trauma.

Please read our subforum above, and see if anything is familiar to you. Many PNs are environmental, meaning something you are eating or not eating, or exposed to (toxins, drugs, vaccines) can be triggering it. There are hereditary PNs...
http://neurotalk.psychcentral.com/thread121564.html

Flashes in vision, suggest a circulation problem, or low blood sugar. Sometimes they are auras of a migraine. Flashes in vision without the headache are called silent migraines.
Did you have a homocysteine test? When elevated this can affect the blood vessels and damage them. If the flashes are more towards the end of your run, it is the stress somehow from the run I'd look at.
Also you may be low in potassium and magnesium, which create weakness and circulation problems. About 70% of Americans do not eat foods with magnesium in them. So they walk around in a partially deficient state, and then add to that vigorous exercise and you have an electrolyte problem.

Sometimes you have to be your own detective to find your trigger. Since you are heavily into running, I'd suggest you stop for a month or two and see what develops or changes.

And--
 

--normal EMG's or nerve conduction studies do not rule out all kinds of neuropathy, as those tests are too gross to measure problems with the smaller, unmyelinated fibers; to gauge those one would need very special testing, such as qualitative sensory testing, sudomotor axon reflex testing, or a skin biopsy (the current gold standard).

I tend to think,, though, from what you're saying, this sounds somewhat systemic, though, and investigating along the lines Mrs. D mentions is likely a good idea. I'd also be tested for gluten sensitivity/celiac if you haven't already been titred up for that.

So is it possible that all of these symptoms could be the result of a pinched nerve? I am unsure of what env. factors could be causing this - I eat very healthy (especially for my age) and live in an area that is not near any kind of toxins/factories. Also i looked up MP and it doesnt sound quite like it fits because i have had tingling as high as my stomach area. Also isnt CMT ruled out by the EMG test? I feel like my symptoms most closely match MS or CIDP but it seems through the tests i have had that both are ruled out...what kind of causes are left that would not affect the EMG (glenntaj - what diseases affect unmyelinated fibers)? I forgot to mention that I have very high arches in my feet (not sure if it matters). mrsD what is a homocysteine test? (it sounds like a normal blood test to me). Thank you guys so much! I am working very hard to figure this out before mid august because then I go back to school in a different state which will make further testing almost impossible.

Also arent the only kind of neuropathies which affect things like walking usually the ones which show up with an EMG (i guess this is why i am so confused).

Homocysteine is a blood test, but not in the standard chem panels which are groupings normally used.

In a young person, it is not typically done either. But if it is elevated, it would point to a low B12 utilization factor, or a genetic problem where the body cannot convert/methylate B12 and folic acid. This is pretty common, and not rare. But not all doctors look for it either.

When you engage in extreme exercise you place yourself on an edge of sorts. Without the activity, you might present later in life with the same symptoms. WITH the activity, it may accelerate whatever your weaknesses are. They could be metabolic, (light flashes in eyes point to this), or mechanical, as in disc stress in the spine.

To get enough magnesium, you have to have 400mg a day and an example of foods to consume are 3oz of Almonds a day (270mg right there) and beans, oatmeal as examples.

Having a V8 vegetable juice after a run will provide 800mg of potassium. This is one of the highest sources. Energy drinks in comparison are very low, with Gatorade at 30mg.
An average person now is suggested, to consume 4.5 grams (4500mg) of potassium rich foods a day.

If your Vit D is low, there can be derangements in calcium and when this happens, you get paresthesias, or odd tingling/numbness. So getting Vit D tested can be helpful. Many young women have been found low in calcium and their bones are being robbed for it, today.
http://www.nof.org/aboutosteoporosis...oungadultwomen
I saw an ABC medical segment over 10 yrs ago on this subject and it is still a serious issue. If your running is impacting your periods, it is a greater issue even.
Your goal for Vit D today is 50, that is the newer suggestions.
If you don't have good Vit D status, then you are not absorbing calcium from foods. Don't assume that if you are eating well, all those nutrients are going where they are supposed to be going.

There are many factors that could be going on. A neurologist will be looking for organic factors, tissue/nerve damage only. Typically they don't address metabolic nutritional factors.

Looking at your lifestyle, the flashes in your eyes happen after a run, and to me they are the most important sign, unless you haven't told us everything. They can come from the retina itself, or the brain. If from the retina, that can be low blood pressure, spasms of the little vessels, high blood pressure clamping down on them, low blood sugar, or some autoimmune problem in the cells themselves. You might want to see a good opthamologist MD for this if it continues. If from the brain, I'd be concerned if you take birth control pills, as these can cause strokes in otherwise healthy young women.
Homocysteine elevations often show up in the vessels of the eye. And while you are young, you could still have this, if you are not methylating B12 and folic acid properly (this is genetic).

Reliance on fancy conduction tests, will only reveal damage to nerves and not all sensory damage even shows up on them.
So do consider these other issues, as well.

hi again
i have never had normal periods even before i began running...usually only have like 5 each year but the doctors always said this is because i am athletic....wouldnt all of these low vitamins have been tested for with eth blood? they tested like 10-15 different things and all came back normal

also i forgot to mention i have been to an eye doctor and they said that my eyes are fine...

Regular doctors do not interpret vitamin testing accurately. That is just the way it is.

Labs in US still report levels of B12 at 250 as "normal", when new guidelines for doctors are in place which start at 400.

What I post here is also at this medical website:
http://www.aafp.org/afp/2003/0301/p979.html

You are only 18 yrs old. Doctors don't look for dunning things at your age.

PN is not common in your age group. Unless you have CMT that you inherited.

All PNers benefit from looking at lifestyle factors, and making adjustments based on them. For your age, the largest potential, is vaccine injury, and/or gluten intolerance. Next comes mechanical compressions to your spine from the running activity.
Next is low Vit D, which impacts calcium metabolism, then comes low blood sugar (since your symptoms are worse after running).

The fact you have few periods, suggests low hormone status, which then suggests calcium problems. It is your choice to follow up on these potentials. Unless you go to a holistic doctor and have another type of thorough check up you will not find answers completely with a neurologist IMO.

When a person gets symptoms from an activity, that is a cardinal sign IMO to follow. But not all doctors will do this. So it is up to you to do this if you wish to feel better. But be advised, running is no guarantee at all of good health. It has high impact, and stresses your body, as you are now noticing. Substitute swimming or a lower impact type activity for a while and see if or how your symptoms change.

Learning about PN and how your body works is a task you need to consider. Do a little homework each day. Our subforum has many links for you to look over.
Your issues may not even be PN, they may be symptoms of something else. Only time, and learning will point the way for that.

4700mg is the current RDA for adolescents and adults, but what's 4% among friends? :p
http://lpi.oregonstate.edu/infocente...index.html#rda

Here's a 2010 chart for potassium-rich foods
See Appendix 12 (bananas don't even make the top 20):

...which is different in many cases to the previous 2005 chart, but I would spoze there are a lot of variables in this kind of testing/evaluation.
PN is one of those things that has multiple meanings; it's a condition, yes, but it can also be a symptom of something else (supporting what MrsD & Glenn have said).

Doc

also sorry i forgot to mention this....the MRI showed a hyperintense spot on my brain but in a place which made the doctors believe it was not MS could this spot mean somethin?

I don't think anyone here is capable of answering this.

You might ask the same question at the MS forum here.

http://neurotalk.psychcentral.com/forum17.html

That's a little like saying, "I have a pain but in a place which made the doctors believe it was not appendicitis. Could this pain mean something?"

It's not a lot to go on -- I would think it depends largely on exactly where that spot is. If it concerns you, I'd ask your doctor about it.

Doc

Might be small fiber neuropathy
 

Do you have loss of pinprick sensation or temperature snesation in the legs? The dizzyness on standing might come from autonomic dysfunction.Your symtoms might be from small fiber neuropathy. The EMG is normal with this PN. Your neurologist could do a skin biopsy test and/or send you for autonomic/sensory testing.

Glenn

but doesnt small fiber neuropathy not have symptoms like tripping, skidding , etc (gait disturbances)? thanks

Do you have gait disturbances all the time? Or only after a workout?

If all the time, I'd consider getting DNA testing for CMT.
Typical sensory PN does not cause gait disturbances in the beginning.

Some of the more progressive ones like GBS (which can follow a vaccine), or some from food poisoning (like Campylobacter) will progress to motor impairment. But these are usually swift.

Autoimmune disease like Lupus, may also affect motor. Those can be tested for.

Hi Boiler
 

Welcome to Neuro Talk. You did find a good spot on line to talk to folks. If you have the concern about the "spot" by all means ask your doctor. Nobody likes to worry, when it may be nothing terrible wrong at all. You won't know until you really question all aspects of what your tests show. I just wanted to stop by and say a friendly hello. Explore all the sites, and visit the MS forum, and perhaps there will be others to help respond with this. MS is very hard to diagnos is my understanding. I am not an expert at all, I just read alot of the posts. My cousin also has MS. I do wish you all the best, and hope you find a few friends here too. ginnie

CMT1 and CMT2 EMG/NCV testing
 

When the myelin is damaged (CMT1) the nerve impulses are conducted more slowly than normal. If the axon itself is damaged (CMT2) the speed of nerve conduction is almost normal, but the strength of the signal is reduced. All forms of CMT are either demyelinating or axonal in nature. CMT is a multi-gene disorder and so there are many different defective genes which cause the disorder.

CMT affects the peripheral nervous system (PNS) and therefore it results in both motor symptoms (weakness and muscle wasting) and sensory symptoms (numbness). CMT is progressive and usually slowly.

Family history would be a great help in diagnosing CMT although CMT has been misdiagnosed as other diseases.

It is very important that you have a neurologist who is an expert in CMT and would be the doctor to see to oversee an EMG/NCV test.

DNA blood testing might also be in order to either rule in CMT or rule it out. They now have DNA blood testing for many many types of CMT but if it would happen to be a type that they do not have testing for does not mean that you do not have it. DNA blood testing is very expensive especially if they have to do the whole panel of testing.

Five a year is probably normal for you as your doctors have said that it is due to your being athletic. You are also young yet and it might take awhile for them to become normal. (Whatever that might be for you). Personally, I wouldn't worry about it as many other things, stress being one of them, can contribute to less periods. And a lot of hard manual labor as well. I've been there at one time.

paraneoplastic auto antibody test
 

My dear friend just received news that this test was not normal. He was told that normal was <.2 and his was .16. I don't know what this all means. He is experiencing loss of muscle,some double vision and has stage 3 heart failure. I am his main caregiver and and lady friend . I am very worried.

@boiler:

Another cause of gait disturbance is overdosing on B6.
At your age, you may have a trainer, or school coach?

I have experience seeing coaches of young people push very high dose B6 on the athletes.

One sign of B6 overdose is a form of neuropathy where gait is affected.

Ladyerin17 .16 is less than .2, so that number would make the result normal if those numbers you posted are correct.

mrsD - i do not have any coaches or trainers and do not take any extra form of B6...once again i was walking today and tripped on a minor imperfection in the sidewalk...dont know what is causing this (drop foot, weakness, etc)

Does anyone in your family - mother, father, siblings, grandparent, nieces, nephews, etc. have any of these problems that you experience with walking :icon_question: In other words, any family history.

kitt - yes , my grandma has idiopathic peripheral neuropathy and she cannot feel ANYTHING below her knees, she went through most of the tests i am now (minus MRIs) and they found nothing except that her nerves were dead below the knees -however my EMG was completely normal and showed no sign of nerve damage

It sounds like you may very well have CMT, small fiber neuropathy doesn't show up on EMG's, not until you have large fiber damage as well, like I do. The fact that your grandmother has it is extremely significant. You may want to pursue genetic testing for CMT, especially since you are so young.

I agree with Suzanne C. Please refer to my other post #18 concerning EMG/NCV testing for CMT1 and CMT2.

I am not saying you do have some type of CMT as I'm not qualified to do that nor is anyone else on here, but from what you have posted it makes a person wonder.

Also, tripping and clumsiness were my primary CMT symptoms through childhood and young adulthood.

wait .. but she doesnt have CMT (i dont think) just peripheral neuropathy and doesnt CMT affect large nerves which would show up on an EMG? Is genetic testing commonly for CMT and what does it entail? thanks so much

kitt - you said yourself : "When the myelin is damaged (CMT1) the nerve impulses are conducted more slowly than normal. If the axon itself is damaged (CMT2) the speed of nerve conduction is almost normal, but the strength of the signal is reduced"

both were normal for me....also what about my other symptoms and heat sensitivity (or maybe stress - could heat or stress bring on symptoms of CMT?)

You have said that her neuropathy is idiopathic. If she is not diabetic, many idiopathic neuropathies are actually hereditary neuropathies. They do not necessarily show up on an EMG/NCS, and the skill of the administering neurologist is a major factor. In my case the speed and amplitude are both reduced, but my skin biopsy showed a far advanced neuropathic process, and i had progressive numbness for 12 years before i went to a neurologist. I have axonal type 2 CMT. CMT also affects the small nerves which causes the loss of sensation. The loss of sensation and the death of the nerves precedes the muscle atrophy, but the clumsiness and tripping due to foot dragging are early symptoms.
It is a very idiosyncratic disease and everone's experience with CMT is different.
As Kitt has said, genetic testing might be wise, but negative results do not rule out CMT as there are types which do not have tests, and the tests are not 100% accurate.

Susanne C - because of the normal emg is it more likely that i would have type 2? Also did u have genetic testing or how are most people diagnosed. Finally, the symptom that made me finally decide to go to a neuro is tingling up my legs...is this a symptom? thanks so much

Type 2 does show up, not so much on the EMG, although mine was abnormal, as on the NCS, or nerve conduction study. The slower responses show axonal damage. Mine were both done by extremely well qualified neurologists, the second set at Johns Hopkins, required almost an hour of heat lamp treatment before I was warm enough for the test. Are your hands, feet, and legs often cold? This has been a long standing symptom for me.

Did they do a nerve conduction study, or just an EMG? I believe you have to have muscle deterioration before it shows up on the EMG, but I am not sure. Type 1 is often earlier onset than type 2, but my half sister wore leg braces from childhood for foot drop, so it really varies wildly.

Other than the clumsiness and tripping, I could never run or skate or anything like that, which seems to argue against your having it, restless legs and pins and needles were a symptom. Numbness started in my toes in my early 30's, scared me, I thought it meant diabetes, so I didn't mention it to my doctor until it passed my ankles in my mid forties. It is past my knees now at 50, so has speeded up lately, along with the muscle atrophy.

Most people are diagnosed on family history, although genetic testing is becoming more popular. It is also quite expensive and not fool-proof. My neurologist just kept saying it looked like a hereditary neuropathy. The axonal diagnosis was made immediately based on the NCS. I forgot about my family history at first because I have never been in contact with the side of the family that carries it.

I was sent for the HNPP test because I do have pinched nerves at all the arm joints, but it came back negative. I elected not to have the rest of the Athena genetic tests done because there is no treatment anyway, and there are not tests for all the variants. My 27 year old son has definite symptoms now, and would like me to get the testing, but our insurance has changed and I will wait until a year when I pass the deductible.

We are not saying that you have CMT, only that with an unexplained neuropathy in the family it is a possibility. May I ask how tall you are? Extreme height can aggravate and accelerate neuropathy symptoms. I am 6'2" and my son is 6'4".

I only put information from reputable sources. It is not my personal thoughts. This is if I am reading your post correctly.

I had a nerve conduction study and an EMG - both were normal. It is true i run almost everyday however i occasionally drag my feet when i run. Also YES i do tend to have very cold hands and feet (i can remember one time that my fingers were slightly purple i was so cold). However as far as height goes that is def not part of the equation , i am only 5' 1''.

When Suzanne C. mentions Hereditary Neuropathy with liability to Pressure Palsies (HNPP) it is the opposite of CMT1A. With HNPP you have a deletion and with CMT1A there is a duplication. If interested you can review the site.

http://www.hnpp.org/

In my case I could do anything and everything until symptoms appeared in my early 50's. At that time I still was doing many many things but as CMT progressed that changed.

DNA blood testing might be in order. Here is a site where you can get information on it.

http://www.athenadiagnostics.com/content/index.jsp

You can also telephone them.

And as Suzanne C. said we are not saying that you have it in your family but there certainly is a possibility. Can your mother run, does she trip over every little thing, are there other symptoms which she may have.

http://www.healthline.com/galeconten...hic-neuropathy

You have probably seen this site.

Also, if you overdo anything especially exercise, you can exacerbate symptoms of CMT. I have not heard that height has anything at all to do with it. I know a number of people with CMT who are not tall at all including myself.

my mom does not have any symptoms as far as i can tell (but my grandma did not begin having symptoms until she was in her 50s). could the symptoms really show so late in her and so early in me and be the same thing?

Kitt, I do not think that height has anything to do with hereditary neuropathies, but studies have shown that it is a factor in other length dependent neuropathies, including diabetic neuropathy, so I was just curious. I should have been clearer. I think our symptoms may be worse because of abnormally long arms and legs and the length the weakened signals have to travel, but that is just speculation. My neurologist and podiatrist both mentioned it, and my other son was tested for Marfan's syndome because we are such anatomical freaks, and he has cardio pulmonary issues due to a caved in ribcage, 5+ on the Haler index.

Yes, Boiler, age of onset and severity of symptoms can vary wildly even within families. As I said I only recently needed canes and am considering bracing, but my sister had braces since early childhood. It can absolutely be the same thing and as Kitt said, your exercise regime may have aggravated it. Please realize that we are patients, not doctors, and we are not diagnosing you, just trying to help you categorize your symptoms and options.
I think the coldness may be highly significant. Is it accompanied by increased pain and do you have great difficulty getting warm?

hmm i dont think i have ever had increased pain when cold and when i get cold it can be like 70s outside i will wear like fleeces and still be cold sometimes. i know that u r not doctors but i appreciate your help any way. i looked at the athenas website...is there a way to narrow down which genes to look at (there are like 15)? also does insurance cover these tests typically? and how much do the tests cost? thank you

It really depends on what type of insurance you have. Ours is excellent, and would have covered all the tests, but we have switched to a high deductible HSA plan which covers everything after a certain point. Most years I would have no trouble meeting the $3000, with the gabapentin running close to $2000 alone, but it starts with the fiscal year in April, so this is only a 9 month year. Next year I will most likely have another spinal MRI and the type 2 tests.

Are you able to warm up on your own? Usually with CMT you need an external heat source- a hot shower or bath, electric blanket or heater to warm up. I admit to using my hair dryer a lot. The back of my thighs are particularly hard to warm up.