Hi everyone, I'm a new member here but I've actually been lurking around in the forums for awhile trying to put a finger on my symptoms. I'm a 23 year old male, not diabetic, that's having a lot of trouble getting help. The main reason is because I'm actually living in south korea due to work, and this makes it almost impossible for me to see a good doctor and get a clear diagnosis. I am Korean-American, but I'm not fluent in Korean at all and I feel very stupid sometimes trying to explain my symptoms to a doctor. Korea is lucky because they have national health insurance, but it seems like doctors tend to brush off many things because I guess tests are expensive and they don't want to do it unless they really have to. Also, with how the health system is set up here, I can't just go to a neurologist, I have to be referred by a GP or else insurance won't cover it at all. I've visited several GP's, and all of them say, "no, it's not PN, you're just on your feet all the time, that's why". It's been really frustrating for me the past couple of months because I really have no one to turn to for my problems, except the internet. This is probably the best place to go for answers because it seems like many of you have so much knowledge about this disease. I was hoping that someone out there could hear me out and give me some opinions or feedback, because no one (ever doctors) can here. So I'll just list out my symptoms and just lemme know what you think, if you could take the time to do so.

First of all, I have a herniated disk from 2004 that I never got surgery on. I believe the l4/l5 has degenerative disk disease, and the l5/s1 was moderately herniated. I had 3 epidural injections for this back then and it really hasn't bothered me since. There were days when it ached, but nothing major.

Around late june 2007, I bought a new pair of shoes. I had been wearing the old ones for about 2 years, so it was about time. They were pretty cheap, but not uncomfortable at all. Also around this time, I went whitewater rafting. I didn't sustain any injuries, but my back was very sore, probably from having to sit in a certain position and row constantly. That soreness went away in about a few days. A week after that, I had food from a local restaurant that made me pretty sick. I had a horrible stomach ache and diarrhea all night long. Funny thing it, the food didn't phase my girlfriend (we shared from the same plate). Ever since then, my stool hasn't been the same. It's either diarrhea, or really really soft stool that falls apart after flushing (sorry for the details!)

About a week later, I had a pretty bad headache, but nothing really out of the norm. I took 3 excedrin (not two), and then BAM! my feet started to tingle. I thought it would go away but it didn't. It tingled for about a week, and then was replaced by a mild stinging and burning pain. The burning pain only happened when I was wearing shoes, when I took them off, the relief was almost instant. I thought maybe I had Morton's neuroma but the burning was evident all across the soles of the feet, not just the ball. I got an MRI of my brain done (but this was for a different reason which I actually got a referral for) and everything came back clear. It's really hard to tell if it has progressed since the burning but it surely hasn't gotten better. My feet to burn a little more at night, but that's probably because I've been wearing shoes all day and been walking around all day. I've also noticed that my feet fall asleep quicker than it did before, ie. when I cross my ankle over my thigh, my foot falls asleep when it never used to.

I've visited a few GP's, and one said that it was Sciatica. I've had sciatica before, and it was nothing like this. During my bout with Sciatica, my feet were spared. This is the opposite; my legs are spared, but my feet aren't. Anyways, the GP prescribed my valium and ALA, but again, it's hard to tell if it's been effective or not. I've had a general blood test done, and everything came back clear.

So that's where I stand now; I know it seems nothing like what some of you are going through, but I'm too young for this to be happening to me right now. I'm stuck here for another 6 months at least, and I don't want this to progress because all the treatment options seem very scarce.

Have any of you had similar symptoms to mine? If so, what was the diagnosis? Do you think my herniated disk could be causing all of this? Should I request an MRI of my spine? Like, do you maybe think the rafting incident reaggrivated my sciatic nerve? Are my symptoms typical of peripheral neuropathy? Do you think the food incident/consistent diarrhea could be a factor (irritable bowel syndrome, maybe a parasite)... Why does the burning tend to go away when I take off my shoes? Also, regarding my blood test... it was a "general" blood test. Does that look for vitamin deficiencies, and diseases of the blood? Also, I've noticed that my hair started to fall out; I have found 2 bald patches and bits of my facial hair have been falling out. Does this suggest an autoimmune disorder or am I just too stressed out? I'm sorry that I have so many questions, but these are all the questions I have asked my doctors here and all they give me is a blank stare or discard all of the questions. If you have made it to the end of this post, I truly appreciated you having the patience to read through all of it. I would really like some opinions from anyone. God bless you all.

Welcome. Sounds like you know more than most doctors, here too.

Thank goodness there are things you can cover yourself. I hope you will cover all the sensible and safe possibilities you can with appropriate doses of certain supplements, besides of course having a good diet. You may just get lucky and find that a supplement deficiency is your problem. If not, the appropriate ones will support your nerves and possibly slow or lessen the difficulty somewhat.

Weekends are slow. I suggest you use this time to continue exploring here and the vitamin forum, and then I suggest you stick with this thread you have started, since you have provided such a good background here. Others will be along.

rose

Hi. I'm sorry your going through this to and must be scary to be away. I'm a younger person too well 29 but I know how this can be confusing. Though many here are older the bond is the same and the help I have recieved from these people is amazing. I'm still new to this but I wonder if the back issue is what is contributing to the feet that its coming from your spine. My issue is my legs inner ankle/foot and I know they thought it may be coming from the spine or brain but was not. I hope you can find a doc who will order more tests. Have you had an mri of your spine? What about an emg?As for the stomach issue I have my issues too not in the same as you. Could this doc though order some blood tests to test for celiac or immune issues? I know you said they won't for most but maybe smaller tests they will. Another thought if an option could you have one of your docs from your hometown order the tests where you are? Well hang in there and if you want an email buddy I'm here.

Be sure to get copies of all your bloodwork. There is certain testing to be done and having copies of it will help you know what has been checked and what hasn't.

Do you eat the typical Korean diet and if you do, what do you eat? Are you taking vitamins and if you do, can you list the ingredients and the amts. here? Do you know if you have had a vitamin B12 blood test done?

As Rose said, the weekends are slow.

Billye

And yes, definitely get an MRI of your spine.

And get the results and make copies of every test you have ever taken.

If nothing gets done in Korea, then when you come home, come on these boards, tell us what state you live in and someone will refer you to a great Neuro who specialized in PN.

But hopefully, you will find SOMEONE in Korea who can get you some pain relief.

And the B-12 level. That is very important.

Read up on these boards about Methylcobalimin. It saved my life, believe me. Althought I am a diabetic. and I have Diabetic Neuropathy. You have nothing to lose and everything to gain if you start taking Methyl B-12.

So best of luck.

Melody

"I had food from a local restaurant that made me pretty sick. I had a horrible stomach ache and diarrhea all night long."

This might be ciguatera poisoning. It can vary from person to person, even if they all eat the same food. Read the material below -- it's from
http://www.whoi.edu/redtide/illness/ciguatera_fish_poisoning.html


One reason it can be so variable, even without the issue of different ethnic groups, is that one person might have already been exposed to ciguatera.

It's cumulative. The person with the worst reaction could be the person who has eaten other meals, which already contained ciguatera.


Clinical Presentation:

Ciguatera presents primarily as an acute neurologic disease manifested by a constellation of gastrointestinal (diarrhea, abdominal cramps and vomiting), neurologic (paresthesias, pain in the teeth, pain on urination, blurred vision, temperature reversal) and cardiovascular (arrhythmias, heart block) signs and symptoms within a few hours of contaminated fish ingestion.

The pathognomic symptom of Ciguatera intoxication is hot/cold temperature reversal, although not all patients report this.

The attack rate has been reported to be 73%-100% with ingestion of contaminated fish, without any apparent age-related susceptibility.

Acute fatality, usually due to respiratory failure, circulatory collapse or arrhythmias, ranges from 0.1% to 12% of reported cases; presently in the Pacific, the mortality is less than 1%. Lethality is usually seen with ingestion of the most toxic parts of fish (ie. the liver, viscera, roe and other organs).

The clinical picture may be variable among individuals, even with the same food source, different ethnic groups, and possibly with different types of fish and/or geographic location.

HAIR LOSS:

"There is no proven test for ciguatera poisoning, either in patients or contaminated fish. Over 175 gastrointestinal, neurological and cardiovascular symptoms have been recorded. Diarrhea, abdominal pain, and nausea usually appear within 24 hours of eating the ciguatoxic fish; the illness can progress to include numbness, itching or tingling of lips, hands and feet, low pulse rate, high pulse rate, dizziness, severe fatigue, hair loss, rashes, anxiety, depression, and . . . "

Hello there:

Welcome to our board. I hope you are able to gain some useful information here. You will have plenty of support and maybe someone here can figure out what is going on.

I have 2 suggestions.

First, start with the path of least resistance. The food. Since they won't refer you on to a Neurologist, start with the GI issues and tell them you think you have been ill from food you ingested whenever and it seems to be getting worse. This way, if it is the food causing it, you should find out quickly and receive treatment, though you may have to start over with a new doc, if the old one is indifferent to your complaints.

Secondly, I have PN. Some shoes that I wear cause my feet to hurt and burn like fire. Try changing to a different type of shoe, and make it a pair that is not made from the same material. Leather is better in my case, ALTHOUGH the insoles are not leather and this is what seems to cause me a lot of burning. I would guess I am sensitive to some of the plastics. Some people with PN are extremely sensitive to various types of fibers. Some complaints seem to relate to artificial fibers-hard to get away from those in shoes...

Good luck to you and please, keep us posted.
Cathie

Hi and welcome, your spine does sound very suspicious but it still might not be the cause, i think its very well worth looking into though, if you can get an MRI on your whole spine as it may show if there is any pressure causing this to affect your feet, normally pressure on your lower spine affect your feet but it can come from the cervical spine as well.

As far as soon as you take your shoes off you feel better, well anyone with small fibre damage in the feet, normally can't stand wearing normal type leather shoes, usually aggravates the heck out of them, as there are many,many small fibre's at the surface of the skin, the small fibre's job is send correct signals concerning heat, cold and vibration to the brain, when there damaged they send confused signals that's why you feel that burning feeling and its very common for the feet to burn more at night, some can't even stand bed sheets on them, which makes me ask, are your feet sensitive to touch? or have you any numb spots any were on your feet ?

Loosing patches of hair, have you been to a dermatologist ? Alopecia comes to mind, someone correct me if i am wrong but i think i can be caused by the immune system, autoimune problems can be asociated PN, like Hypothyroidism and another is Celiac disease which one symptom is diarrhea.

I would defiantly take notice of the previous posters and i would get a refferal to see a neuro that is a PN expert not just a normal neuro, to get all appropriate blood and other tests done.

good luck
Brian

I don't think just normal blood work tests for auto immune issues or certain diseases so you also may want to ask about that too. Also maybe to have it repeated. I know in the past with mine it would vary greatly in between. As for the shoes for me ex even wearing socks can aggrivate my issues to an extreme. It really depends. Have you lost weight through this?That could be a sign to your body is not absorbing nutrients and why the stomach issue,hair loss,and possible other issues.

Hi and welcome -- I hope you find some help here. With regards to your symptoms and back problems: Usually, if a disk or back problem causes neuropathy it is not symmetrical. That is, one side will hurt and the other will not, or will not hurt as much. When the symptoms are symmetrical and start at the bottom of the feet and move up, it is usually a systemic problem, like diabetes, toxicity, or..... idiopathic, which means they don't know what the cause is.