Diagnose PN/input appreciated

[Pattylyn]

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.

[glenntaj]

--is that neural symptoms that result from damage to the peripheral nerves can exactly mimic those that come from the spine or brain, and it's why investigation into the cause of symptoms is often long, expensive, and inconclusive.

It's certainly possible for the symptoms that you describe in your lower extremities to come from compression of a nerve root in the lower lumbosacral spinal area, particularly in the area known as the "cauda equina"--the horse's tail--which is the place where the spinal cord breaks up into a series of smaller fibers. The symptoms you have while recumbent do lend some support to the idea that you have nerve pressure somewhere in that area.

Nevertheless, given that you are beyond ideal weight, and have had other conditions, you really deserve a far more extensive work-up than you've had. For one thing, damage to the smaller unmyelinated nerve fibers that subsume the sensations of pain and temperature cannot be ascertained by MRI or EMG, which are much grosser measures--you may need qualitative sensory or other specialized testing to narrow this down.

Have you ever seen www.lizajane.org? This is a comprehensive, categorized set of tests for neural symptoms that a lot of us use (and I and others here contributed in developing) for working through the investigation--and I bet you haven't had many of the tests on it . . .

[Kathi49]

Patty,

Glenn did a great job explaining it. But I wanted to add a DEFINITE YES to #4! My husband has a large herniation at L4/L5; this past week he has had terrible leg, calf and foot pain. I have stenosis, facet arthritis, etc., the worst of it being L5/S1. And my pain follows that specific dermatome; outer calf, ankle and last two toes. However, we both have back pain but it is much worse in our legs. The funny thing is...our MRI's show it but my EMGs are ALWAYS normal. Go figure! :) The BURNING sensations I have had, however, are peripheral. So, what Glenn has said rings true.

[Pattylyn]

Hello again,

Thanks for the input!

I read that site as you advised.

I have had several of the blood tests mentioned, eeg on one leg, MIRs spine, brain.

What would you consider the most important tests that I have not had that I can request.

I would like to get a second opinion from a new neurologist, since my neurologist stated I should talk to their psychiatrist, he says I am obsessing about my diagnose, instead of dealing with it.:(, not actually being mean to me, but he insists that it is JUST a pinched nerve in my back. JUST, Uggg how can a "just" be causing me so much misery?

My sister has Lupus, but my doctor states since my ANA is normal I do not have it.

My aunt age 61 on my fathers side has a strange neuropathy similar to mine. She just got out of the hospital she can't walk anymore. Basically she just stops living claiming that she just can't carry on with the symptoms, everyone claims she is "just" depressed. This frightens me so, could we have the same disease??? I sure don't want to end up like her, in so much pain that I can' carry on, and also suffer severe depression on top of it. Oh dear!

I did go for a consult with a Physical Therapist. The therapist also stated that she felt possibly the PN could be from another source, due to the way I described my symptoms, and the different things she had me do to see what induced and reduced my symptoms. I am suppose to go back to PT today for water therapy. The therapist said she would hate to see me spend so much money and time if water therapy is not the answer to relieving my symptoms, if my symptoms where not truly due to a pinch nerve in my spine. She may call the neurologists office and speak with them, if it is ok by me.

1. What causes the burning in my feet and lower legs to appear mainly at night at the same time each night after I lay down?

2. Assuming I do not have a pinched nerve in my spine, could that mean that the pain, numbness and burning in my feet and lower legs could be from nerve disease in those areas, meaning possibly therapy to those specific areas instead of my back, could possibly reduce my symptoms?

3. What tests have I not had that you consider would be most helpful in diagnosing me correctly that I can request from my neurologist, or a new neurologist if I see one.

The disorder is all getting very scary, each day I am feeling worse and more confused, and I am panicking and getting very depressed.

Thanks again,
Patty:)

[glenntaj]

The most obvious ones would be those that are diabetic in nature--a thre-five hour glucose tolerance test with concurrent insulin levels, to see if there is abnormal glucose metabolism (a regular fasting blood glucose test, or hemoglobin A1c, are insufficiently specific).

After that come a lot of the autoantibody tests--not just the ANA and its variants, but assays for those particular to nerve.

Have you had vitamin levels done?

Take a look at:

http://www.questdiagnostics.com/hcp/intguide/jsp/showintguidepage.jsp?fn=CAP_LabDiagnosis_Periphera lNeurop.htm

Considering the possibility that this is spinal related, have you had any other spinal tests beyond the MRI? Sometimes a meylogram will be helpful in localizing pain generators that do not clearly show on MRI (though that is an annoying test--the people on the Spinal Disorders forum here are good to ask about that, being far more expert on it than I).

[Pattylyn]

Thank You

I had a 4 hour glucose, my sugar was slightly elevated my Dr. said is was not a concern though.

I also had a bone scan that was not included above, that showed arthritis in my ankles.

I am almost positive that the Dr. tested me for vit. B, but I will check to make sure.

Patty

I will keep you posted

[glenntaj]

--that the doctor said it was not a concern; there is increasing evidence that painful small-fiber neuropathy can occur among those who have impaired glucose tolerance well before they would be diagnosed with glucose levels that are considered diabetic.

Take a look at this older thread (lots of references):

http://brain.hastypastry.net/forums/showthread.php?t=2122

[roseterry]

Patty,
I would agree to take a look at the impaired glucose tolerance side, sometimes considered Pre-Diabetes. The thought is that Diabetes does'nt just 'happen' at a specific number... damage takes time and if you do a little research on line, there definatly are cases of those who have PN BEFORE Diabetes or Pre-Diabetes. Such may be the case with me or maybe you too. I am at the very beginning of Pre-D (172) when Pre-D starts at 170 and Diabetes is at 200 and this shows up with me NOW after having PN for 5 months... nothing else in ANY tests shows up for me and I've taken just about everything possible so far. BUT, I am too at least 50 lbs over weight andf I think this is a concern as well when it comes to Diabetes, especially when a lot is carried in our bellies as it is in me.

One Dr told me when I was very frustrated with so many 'opinions' and no absollute 'answers'... to watch for a time when I felt I had done every test possible, then take a step back and go with my gut and what I see and know about myself and my history... decide for MYSELF what the indications are
and go with it! Do what I feel is best, because as you are starting to see, no one has an absolulte answer many times with PN and instead of having to accept Ideopathic PN... I believe after doing all you can getting all the opinions together, YOU are the one in charge of doing what's right for you.

If the Drs can't find a cause, they can't do anything eccept give us pain meds.
They get frustrated too by the way... something to remember.

My indications after many many many tests:

Lead in my foot over 35 years, 1 sensitive urine test by Naturapath shows high, another blood test shows next to NIL by regular blood test by regular Dr.
Regular Drs say not the cause.

Pre-D showing up several months AFTER PN started... it's rare but could be cause PN - Drs not sure at all.

I was very sick for 5 solid months flu/pnumonia, then less than 3 months later I started having the feet pain which escalated greatly in the next following few months. Tests show absolutely nothing. My gut tells me maybe a one time event with some serious Immune system response.... Drs say nah or don't know.

So, I have 3 'indications': Lead, Pre-D, Immune System. No one agrees with any of these, and tests don't really narrow down any of them but I know my body and I know what happened so my choice is to do something about each one if I can. I have the control to make decisions on fighting all 3 of these by studying each. Nutrician, Diet, Suppliments, Excercise, loosing weight.. all of these CAN effect these 3 things.

So all in all I choose to take action on these. Lets say I am completely wrong... All of the changes are certainly NOT going to hurt me right, only help me. And I watch for more tests coming up that haven't bbeen done or something new comes out or whatever... I just don't give up on me. And if I don't like a Dr I fire him/her... done that already once.

I hope I have helped in some way, I do understand youir frustration. We're in this together. Write me personally if you like. Rose Terry RMTerry@prodigy.net

[nide44]

roseterry,
What do you mean by :
"...Lead in my foot over 35 years..."
??

[roseterry]

35 years ago I had a gun accident, a hand gun 22 with 100 pellets of bird shot (lead)... surgery took out only 1.4 of them, so have about 75 pellets still in my foot throught the depth of my foot. Now I did do a lead chelated urin test with Naturapath that showed high lead, but when I took a regular blood test for lead with Nurologist it showed next to nothing... Lord I wish things would be clear! ANY COMMENTS? Rose

re:
roseterry,
What do you mean by :
"...Lead in my foot over 35 years..."
??

__________________
Bob B

[Pattylyn]

Hello Everyone,

I see my family doctor today and am going to discuss my PN with him.

A few weeks ago I saw my neurologist again, she still claims that the PN is from pinched nerves in my lower back, and that I should continue PT for my spine, although the spine specialist states no pinched nerve noticeable on my MRI of my spine.

Still losing weight, trying that, but that is leading me to feel lightheaded, and shaky, the walking leads to more pain in my feet, Oh dear, I wish there was a easy way to do both. Then I wonder could this PN also be from vitamin defiances, but that would appear to show up in blood work if it was so deficient to be causing all this pain. I have had a unhealthy diet, although changing that now.

My PN is painful, more so this week, I was prescribed neurotin, but have enormous fears of taking it, since I hear so many terrible side effects from it, one being weight gain, in addition to memory loss, and great fatigue.

I had a repeat brain MRI, that shows white matter lesions, however they have been there for 8 years with no change, and the neurologists have determined them from migraine, otherwise saying they just don't really know, and have told me to stop worrying, and to see a psychiatrist for my extreme phobia with taking meds., and my extreme fears of having a fatal disease.

Well, I have to admit, lately I am in a state of fear, worry, and can't stop obsessing about my PN, MIR's, and feel absolutely ill all the time, and can't snap out of it. I have problems sleeping and living contently during the day, the fears of my health just pop in my head all the darn time!:mad:

As I mentioned before I am caring for my elderly mother, with no siblings near to help, she is in need of hip surgery in a few weeks, and things have been stressful. The last year I have been through much change, and have noticed my body feeling just "not right" for a while, with odd aches, pains, and sensations, actually all my life, I am 51. But lately everything seems worse. So of course everyone assumes, just nerve's, or I am neurotic. Well maybe a bit, but what is excuse the saying "real" and what is not.:) For instance today, I feel burning behind my legs, and other areas just on and off in areas on different parts of my body, so weird, and then I just can't stop thinking about it making it worse.

I work full time, have a wonderful husband, wonderful daughter and son in law, and good family, except for my sisters live out of state, making it harder for me. Otherwise I am fairly healthy, except for this darn PN.....blood work is usually normal, high sed rates at times, sugar was on the high, but the nurse said considered normal, I will check that again today, thyroid normal, ana normal, (sister has lupus) I do have an immune disorder that has caused me to have vitiligo, I got a bad virus dental assisting years ago, then got very sick for a about year, then started to improve. My mother also has vitiligo.

Thanks for listening, I will pop back and post after my office visit.

I applicate your support and advice.:)

Pattylyn

[nide44]

Most family doctors don't know 'diddeley' about PN.
Most neurologists are just as bad.
Only a specialist neuro, who regularly treats PN and, hopefully -
is involved in research in PN, can treat you properly.

Stress is a large contributing factor in PN pain.
Don't dismiss the need for some form of counseling in that area.

Your fears of med s/e before you have taken the med and tried it,
are unreasonable and illogical. Try it first..... it won't kill you.
There are over 75 different meds Rx'd for PN.
Most take at least 2-4 weeks to titrate up, then find a working dose and
if it doesn't work, titrate down- then try another. This can be a long and
frustrating, painful, search - until you find the right meds for you.
Be aware of it. Be forewarned. It takes strength and guts to fight
this devastating condition. You won't win, by 'wimping' out.

But no one has ever died from PN. It is not a life threatening condition.
(unless it is body-wide, autonomic PN - and that can be treated)

High normal blood sugar suggests a pre-diabetic state, that can continue
for years before true diabetes, but is considered to be a factor in causing PN.

[Pattylyn]

Thanks Bob for your reply, I needed to hear a good firm post like yours, especially about taking medication to help me, and that PN won't kill me, although it sure is a painful disorder, that has no easy diagnose in some cases.

I am not properly treating my PN, worried and doing nothing, I don't want to wimp out! Hopefully I can get support here too, that is if I don't drive you folks crazy, the medication phobia is a real issue with me, and I am going to see a therapist on May 5th.

I just got back from my family doctor, who claims the PN could be pre diabetic PN....the MRI of the brain lesions he still confirms is from migraine, and says since there has been no change in years feels I am obsessing about that to much.

He states my poor diet and stress of my environmental life situations the past year, can be causing much of my ill health.

My BP was high 145/100, which has him concerned, however its ONLY high at his office, so he is going to check that again next week and see whats up.

The outcome of the visit was to see a nutritionist, lose 50 lbs., in a healthy manner, exercise at a reasonable degree to keep in shape and to speed up my heart rate and keep in tone, and if so needed step up to the plate and take medications to relieve the PN.

So, I guess I am wondering in your opinion, should I seek out a PN specialist, and get further testing, or should I lose weight, eat a better diet, try the neurontin, then see what happens.

Patty

[HeyJoe]

Do both. You should insist on a glucose tolerance test if your sugar numbers are high sometimes. Pre diabetes has been cited as a cause of PN. If you are prediabetic now you can change diet and exercize to prevent type 2diabetes. Also if it were me id be having specialized blood tests for autoimmune causes of PN based on your history. You can go here www.lizajane.org and get an idea of what tests you need to take.

Believe me we have all woried about how the progression of PN will wind up for us, will we be disabled, need a wheelchair etc. We are all also concerned about possible side effects but as Bob said try them and then decide if they are right for you. Dont let anyone tell you its all in your head. You maybe stressed and anxious but that exacerbates PN symptoms it doesnt cause them. My philosophy is to just keep putting one foot in front of the other.