is this perpheral neuropathy or what?
 

I am new to this site and this is my story.
Started having odd feelings in L foot, like a band was around entire instep. Had low back pain as well. Went to my chiro w/o success. Back got better, not foot. Had 2 massages, no help. Went to MD had CBC, CMP, TSH, B12, Dilantin level, ESR, RPR and ANA drawn. All WNL. MD says peripheral neuropathy. Need to quit smoking( which is a no brainer, right?) but have not done that as of yet. I feel like I need to have a MRI to accurately dx. I have no pain and it has went to other foot as well. I wonder if it may be related to a hernia surgery I had 2 years ago and scar tissure has built up and pinched some nerves?? IDK! Sometimes if I have not had a BM it is worse. Feels better when I stand. The numbness also is more pronounced if laying on the side of inguinal hernia repair.
My question is if it is p.neuropathy hows come I never have pain or burning?
And should I go see a Neurologist and request a MRI?
Thank you for listening and any advice appreciated.

If you have neuropathy, MRI won't show much. Get a nerve conduction study from a neurologist. They stick pins in your numb areas, and use a reflex hammer to pop you in nerve hot spots that will cause a reaction.
Sounds like the fun is just beginning, the burning and stinging and shooting nerve pains will come in time. Almost always starts off with just numbness. That's why most people don't do much about it until it starts hurting. If it's just in one foot, I'd say it might be something else, but if it's spread to BOTH feet - you are probably screwed. Also, if the numbness never actually goes away, that's a sign too. Best of luck. You're in the best place you can be by coming here -

Brue

"within normal ranges"

That is a very debatable statement.

Many of the "normal ranges" are not normal. Especially the B12 and TSH thyroid and Fasting glucose. None of the legal "normal ranges" are acceptable in any of those areas, in my opinion, and many others.

Just something to think about. :)

Best advise: Be your own researcher. Don't rely on your dr to give you the best advice, seek out every single test and result and know that you care more about you than any dr ever will. Research on you own.

good luck

? if neuropathy
 

You say the "fun" is just beginning. This started in Feb of this year. It started in L foot and within one month now in R, more so in L. Wouldn't you think by now there would be pain.(6 mos). I am a RN as far as being able to interpert the labs. Yes my B12 was on the low end and did try B12 injections for a month and am now taking supplement but no change. I have wondered about the diabetes part since it is in my family but again have not had appropriate testing to rule out. I requested A1C but it was wnl too. I think my next step is to make appt with a good Neurologist. And that is hard to find in my opinion. Again I am new to this and just rambling and do appreciate all advice.

First off, B12 injections may be less effective than taking Methyl B12 lozenges; see the sticky on this site.
You are in a better position to start reversing the symptoms than some of us who have had degradation over years. I believe the diabetes and neuropathy explosion we're seeing is related largely to dietary gluten. It's much more than eliminating a piece of toast with breakfast; it's in almost everything, and causes tremendous biological damage. You can see links on this from this site, as well.
If your neurologist is like most, they will downplay anything diet-related, regarding either causality or remedy. I understand that you have a medical background, but be careful of the pharmaceuticals you are likely to have prescribed. You may be better off carefully considering the supplements recommended on this site. Please remember, it probably took years for your condition to reach this point, and it is not likely to improve immediately. I believe supplements work, but they take time; a month is not long. The drug companies have gotten as big and fat as they are by offering "instant relief." It has some appeal, certainly, but at what cost?

6 months isn't a long time for this affliction. it took me a lot longer to start feeling enough pain that I went to the doc's to get it checked out. Get the nerve conduction study. That will answer it one way or another. Steven is right that you're just starting to show symptoms at the end of a long process. Not sure about his obsession with gluten, but I keep an open mind about everything, and try to stay away from it as much as possible too. My reference to 'fun' - I apologize for that. But, from my experience, enjoy what time you can before the pain starts in. Because if you have neuropathy, it'll never go away. Ever.

no need to apologize, no offense taken. I have no intention of adding any meds to my regimen. Is PN disabling or just literally a pain you live with? Do your symptoms vary as far as the numbness and tingling through out the day? You know as being a nurse I guess I have not learned much about this disorder and feel quite ignorant. I know everyone is different but interested in hearing how others do and what they experience in sensations.

The nerve conduction study showed that I had 'sensory' neuropathy. That means that the surface, or long nerves that are closer to the surface are the ones affected. I don't have sensory-motor neuropathy (think that's how they spell it), if the motor region of the nerves are affected, then the mechanics of movement are affected too. You might get drop-foot, where it drags, for instance. I guess you could say that mine is strictly a variety of pains and not technically a handicap in the classic sense. Problem is, one of the symptoms is swelling (edema) in the feet and legs which are due to circulation problems caused by the nerves not working to constrict the capillaries and push the blood through, so fluid is created. I had it going up into my knee, and causing great pain and handicapping me. I got that under control eventually with diuretics, which I don't use all the time because I don't need to.
My situation goes like this - I have numbness in my feet, have a little feeling in the arch area, but not much, the rest is pretty numb. I have stinging and burning, which I control with gabapentin (neurontin). One 300 mg pill lasts almost 4 hours. Then I feel the stinging and take another one. On and on.

I have shooting nerve pains (which kind of feels like you have a cramp in your foot and your toes lock up, that kind of stabbing pain), and my feet also ache all around, and when they start aching, I take tramadol or vicodin. Usually tramadol because I can function better during the day. The ache is caused because when I walk, I feel like I'M WALKING ON ROCKS IN MY BARE FEET-LIKE AT THE BEACH, even though I have shoes on. There are no bumps on my feet, they're completely normal looking. I have discovered shoes with a spring on the heel called Z-COIL, look it up, I think people like nurses wear them because they work all day on their feet. So, the 'walking on rocks' phenomenon, while it has no structural defects that contribute to it, mimics a handicap anyway. That's why you can't just say 'it's a pain', because until you experience the VARIETY of symptoms, and the fact that they're not organic in origin, and don't go away, you will have a whole new category other than 'handicap' and 'just pain'. It's a whole new world. I could never have understood it until it happened to me. Hope this helps. And every day is different - you'll probably experience a different variety of pains, even though the stinging and burning usually become a constant.

Welcome to NeuroTalk:

I just returned from a long vacation.

But one thing stands out for me initially in reading your opening post.

Dilantin is a known cause of neuropathy.
If you Google "phenytoin neuropathy" you can read all about it.

There are other possibilities at this time...mostly you should get your actual B12 result in numbers.... WNL is not adequate since many labs report low levels as "normal" still in this day and age!

I have wondered if the Dilantin has added to this. I have been on this med for almost 39 years. I said my labs were wnl as I have the results with the normals on the results. My B12 was 319 with normal range listed as 211-946.
I also wonder if my nasty smoking habit has added to this as well. It just feels related to something in pelvic/groin area alot of times. as I have said I just don't know. Think I am falling apart. I was also really watching how I ate until right before this started and went back on the bad carbs and junk. Some of it is common sense but I just really want to know if it is pn and why?

mymarie, pn affects people differently. there is no way to predict as to wether you will ever have pain, as to wether the areas affected will expand, stay the same or even get better. some people have numbness, or numbness and pain, or pain, or burning or tingling etc. two people can have the same type of pn and have completely different symptoms.

I would consider your B12 low at that number.

But that is just my opinion.

I do not trust a blood B12 because it includes active and inactive B12 in the gut. Only active B12 count test is more acurate. For me personally, my last B12 blood test was a waste, it was 4,000 and that is because I didn't stop taking all of my B's before the test.

Regardless what result is, when I take enuf B12 my body tells me, not a test. But your number was at the low end, in my opinion.

I was tested for diabetes and dr said no. But I bought a monitor and believe I have had spikes for years when eating a heavy carb meal, and spikes are as deadly as actual diabetes for affecting nerves. My research has shown me that most people have been diabetic long before any dr or test will confirm it.

It's just important to not get caught up in "within normal ranges" is my best advice for myself. Normal is not so normal.

Thanks for the level...it is indeed low. 400 is now the recommended cut off point for needing B12 supplements.
Here is a medical educational site for DOCTORS which is easy to understand for everyone actually. It explains the new 400 cut off point.
http://www.aafp.org/afp/2003/0301/p979.html
Notice that this paper was posted in 2003... it is a shame that physicians remain glued to the old lab ranges even today.
I'd start on some activated B12 called methylcobalamin, ASAP.
Here is our B12 thread:
http://neurotalk.psychcentral.com/thread85103.html

39 yrs is a LONG time for Dilantin. Many patients today, do not use this drug, because of the toxic potential it can show over time in people. I've seen some patients also get liver functions damaged with long term use.

Yes it is a long time. I had a neuro wanting to change me to another med but after talking with my pcp and really thinking about I came to the conclusion that I have "danced" with this med for years and we are quite use to each other. I have been seizure free for the last 25+years so why change and take the chance of having a seizure while driving or at work or just anytime. Believe me the long term affects scare me but I feel I have no choice but to keep taking this med.

Well, I do think that the "new" treatment for seizures is to
consider discontinuing the meds when a patient has been seizure free for a certain number of years.
Here is some more info to discuss with your doctor... don't discontinue on your own, and if you decide to with doctor's permission a very slow taper is safest, based on the papers published so far on this subject.

Example:
http://www.ncbi.nlm.nih.gov/pubmed/16530017

While this factor is still controversial, it does work for some.

Perhaps you could visit our Epilepsy forum and ask there about discontinuance.

One factor that must be considered is that the drugs actually lower the seizure threshold for some people. This is the main reason phenobarbital is no longer used for infants and children who have febrile seizures. I can recall dispensing it by the gallons per week, in the 70's. Now it is rare to use phenobarbital at all for anyone! It was discovered quite a while ago that these children could become lifelong seizure patients if given phenobarbital as children to prevent fever induced seizures. So the concept of lowering seizure threshold is important and demonstrates the sensitivity of the nervous system in general.

I do think you should start methylB12 now, however, as your results show a need for it.

Long term Dilantin depletes:
Biotin
Calcium
Folate
Vitamin B1 (thiamine)
B12
Vitamin D
Vitamin K

So your chronic use of Dilantin may have created a need to supplement any or all of these nutrients.
This is from the reference I use, Drug-Induced Nutrient Depletion Handbook by Pelton and LaValle 2nd ed.

http://drugs.wellitude.com/2012/01/26/phenytoin/
This link reiterates the reference I have.