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.

You guys are great. It feels good to post something, go to sleep and wake up with a bunch of responses =). Thank you.

Rose, thanks for the advice. I did buy a bunch of vitamins.... Methyl b12, benfotiamine + B complex, ALA, Gonna order some GLA, Ginkgo biloba, Acetyl-l-carnitine. But I was wondering if it's ok too hold off on the B vitamins until I get a blood test for possible deficiencies? Unless my general blood test should have already tested for them. The results were all in Korean so my GP just said your blood is normal. I don't really understand what she meant by that.

Daniella, I have not had a MRI of my spine. Nor have I had an EMG. I do however, suspect that it is small fiber damage if anything. Also, it's been really hard for me to be referred to a neurologist to get to that EMG/MRI phase. In regards to the blood test, do I have to request a specific blood test? I thought maybe the general blood test covered most things.... Am I wrong? And yes, I have lost a lot of weight. I actually lost about 10 pounds in one month, but I think that was due to lack of exercise because of this. I like to lift weights and take my protein shakes, but have stopped doing this since my feet were affected. I actually feared my feet were affected by me doing squats with a bad back, which would again, be a possibility... But anyways, the weight loss was mostly muscle, and I have started to gain it back by eating, eating, eating.

Silverlady, my diet hasn't changed too drastically from America. I do eat the traditional korean diet, which consists of Rice and vegetables, but I used to eat that in the states since my parents are very traditional. I do of course, eat lots of meat and dairy as well. As of now, I'm only taking alpha lipoic acid 600 mg a day, which my GP prescribed. I have bought some B vitamins but I am waiting on them to do a b-vitamin blood test first.. I don't want any false readings...

Melody, thanks for the advice. I actually bought the B12 cause I read about you raving about it on these boards. I will push for the MRI, I am really hoping that the spine is causing it....but that doesn't explain the diarrhea.

NTlegend, that could be a possibility. The only problem is that I don't eat fish. I stay away from all sorts of seafood. Is there another illness that's similar to that but doesn't require the ingestion of bad fish?

Yorkiemom, I have changed my diet since. I'm mostly on a sandwich diet that is high in vegetables. I drink water most of the time and try to stay away from sugary things. I don't know how it has affected me but I think I may have to give it some time. In regards to shoes, I bought another pair and spent a lot of money on them. I don't feel a difference, but again I may need more time.

Brian, my feet are not sensitive to touch nor do they have any numb spots on them. My feet actually feel normal to the touch; it's just when I put shoes on for about 2~3 hours or so. I've been to a dermatologist, she said it was caused by stress and gave me a steroid shot for them, and the hair seems to be growing back slowly. I wish it was that easy to say "hey, I think I have PN, can you send me to a PN expert?". To be honest, I don't even know if a PN expert exists here. The process to get a referral is painful and takes a long time. I also noticed that you pretty much healed yourself of your condition... how long did it take and how did you approach it?

Dakota, yes my problem is symmetrical, but my right foot burns noticeably more than my left foot. There are times where it feels like both my feet are burning, but in actually it's only my right. Don't get me wrong, the left one burns, but it seems like most of my attention is spent on the right foot. The right foot also buzzes at times, where my left foot doesn't.

Again, thanks to everyone for the quick responses. It's good to know that I do have some sort of support.