Hi all

I don’t even know where to start so this might be a long read. My name is Eugene and I’m from South Africa. I’m 30 years young .

About two years ago I had a operation where (pardon the details) I had rectal polyps removed. Everything went fine. It was just inflammatory polyps and nothing to worry about. The surgeon wanted a colonoscopy as a follow up just to make sure there were no other polyps located in the colon. (Colonoscopy was clear).

A few days after the colonoscopy everything went haywire. I had pains in my hands and feet, shocklike sensations throughout my body, burning skins sensations and abdominal pain. Went to my GP and he diagnosed anxiety. Was put on citalopram and alprazolam but it did not help much. So my drama began in 2006. When my symptoms continued, my GP sent me to a specialist physician. He did quite a lot of bloodwork. Everything came back negative. So he said major depression with anxiety. During the whole of 2006 I went to different specialists (neurologist too). Everyone could not find anything wrong and just brushed it off as anxiety.

End of 2006 I started getting terrible stomach pains and a terrible burning sensation over my whole body. The stomach pain started after numerous courses of antibiotics for pelvic pain. (which eventually was diagnosed by a urologist as chronic pelvic pain syndrome. This is gone now…thank goodness). The burning skin also started. It went away after about one month but the stomach pain persisted. So start of 2007 I was referred to a Gastro doc and he did a colonoscopy and gastroscopy. He found chronic gastritis due to H. Pylori infection. Could not finish the antibiotic course as my skin started burning due to the medication. Other than than all was clear. 2007 went by with stomach pain which was now diagnosed as IBS. Burning skin was gone too.

August 2007 I went to my Psychiatrist and asked him if my IBS could be due to my high stress levels. He said definitely and prescriped Paxil to take. Then all hell broke loose. Two days on Paxil and my skin all over my body burned so much that I had to stop the medication. This time the burning skin did not go away. It got so bad that I was hospitalized for a week due to it. Was told it was due to anxiety and was put on Effexor. Effexor made the burning worse. Tried moclobemide. Made the burning worse. My psychiatrist now feels that I have developed a hypersensitivity to antidepressants. I still have burning mostly on my hands and shoulders and face. Sometimes on my feet too. My psychiatrist took me off all medication and my skin felt a bit better. But some days the burning gets so bad that the ONLY thing that helps is 1mg of clonazepam. I have been given Lyrica 150mg to try, but I started it this week. Feels like my skin burning is getting worse. I have been to a neurologist about a month ago. He just said it could be small fibre neuropathy, but seemed to side more with the anxiety diagnoses. He said to try Cymbalta and see him in 6 months if no improvement. I had a CT and MRI of the brain and spine which came back normal.

So basically I have the following definite diagnoses:
- Slight liver enzyme elevations due to fatty liver disease (GI doc says to loose weight. I’m about 20 pounds overweight)

- Been diagnosed with insulin resistance about two weeks ago after a glucose tolerance test. Internist prescribed Metformin 500mg daily. He said I needed to see a nutritionist and get excersise.

- Chronic gastritis due to H. Pylori infection which cannot be eradicated as I’m extremetly hypersensitive to the antibiotics.

I still have skin the burning sensation. I KNOW this is some kind of neurological thing as I saw a dermatologist and he said there was nothing wrong with my skin itself. So what do I do now. My normal GP also starts to think this is neurological.
Could it be due to the fact that I’m pre-diabetic? Could this all just be anxiety. I’m so tired of doctors I don’t feel like going anymore. I just don’t know what to do anymore….and I feel very desperate. Please if anyone could shed some light on this it would be much appreciated.

My current medication is: Lyrica 75mg twice daily (doesn’t seem to help), Clonazepam 0.5 as needed if burning gets very bad. It works great.
If the Lyrica isn’t helping my GP said we could try Neurontin.

Sigh….I just don’t know anymore.

Your story is incredible but all too common. You have the symptoms of small fiber neuropathy with autonomic involvement. You should be being tested for it instead of the doctor making a guess that you might have it, here take this, see me in six months. Some of the tests are skin punch biopsy, which may not be available where you are yet but is considered the best test as of now. QST, QSART, sweat test, and tilt table tests are other testing that can/should be done to test for small fiber neuropathy. You can read some explanation of these tests here http://www.massgeneral.org/Neurology...dOaklander.pdf Pre

diabetes or diabetes is a cause of small fiber neuropathy and you should do all you can to control blood sugar, and take supplements such as b12. If you do a search here on the various topics i have listed you will come up with a lot of valuable information. There are other people here who know much more about SFN and diabetes than i do, i just wanted to get you started.

It is outrageous how you have been blown off by doctors as to the cause of your pain and burning. It is all too common and easy for lazy, uninformed doctors to blame anxiety for these symptoms.

You haven't had any electrodiagnostic tests? No EMG/NCS?
And no skin biopsy? These would help nail the diagnosis.
If they are normal, autonomic tests could be done.

Usually, I recommend people go to lizajane.org for a list of tests to diagnose the cause of pn; but since it's not totally clear you have it, I'd think pursuing the plan of pushing for diagnosis with tests and biopsy.

As Liza Jane and Hey Joe said - sounds like you need to get nerologic testing! My symtoms came on literally over night - from normal to completele numbess in hand and foot - which just progressed... I had a health plan that wanted to save money so all of a sudden decided it was "stress" the catch all for many times for "we dont want to do more or pay for more.... I was literally falling over all the time by the time I planted myself in the office of the health care plan and told them I wasnt leaving until they sent mt to a neurolgoist - who immediately found nerve damage that day thru an NCS/EMG - and then many more tests to try to deterimine origin... !I was put thru several awful anti-depressants /anxiety drugs first - much less expensive to prescribe then acutually sending me for the help I needed and found the ones they tired me on at least - awful side affects even being on a med for four or five days took a week to recover from)....

Encourage you to really push hard for neruologic testing - so you can get proper care!

Thank u all so much for your replies! Glad to know someone is listening. You have no idea (then again I think many of you do) how many tears I have cried over this.

I cannot rememer all my tests, but the ones I do remember I will list:

Basic blood work - normal
Auto-immune panel - negative
Liver panel - elevated liver enzymes (probably due to fatty liver)
2 hours glucose tolerance test - indicate insulin resistance
thyroid - normal BUT thyroid uptake scan show hypothyroidism
B12 - 209 - normal according to the doctors
Hepatitis - negative
HIV - negative
Brucelloses - negative
Epstein barr virus - previous infection noted but not active
Cytomegella virus - previous infection noted but not active
CT scan of brain - normal
MRI of brain - normal
MRI of spine - show some disk problems, but according to neuro everyone gets this with ageing
Nerve conduction study of hands and feet - normal
CT scan of abdomen and pelvis - normal
porphyria - negative
colonoscopy x 2 - normal
gastroscopy - chronic gastritis due to H Pylori infection

this is all I can remember for now. I know no tests was done for small fibre neuropathy. I've decided to stop my Lyrica as its making the burning worse.

That B12 level is NOT normal. You are low, very low. I cannot believe the medical field. They are still using the dark ages teaching. See http://roseannster.googlepages.com/

Please take her advice seriously. She has saved lives with her info.

Billye

Good grief is right.

You are probably suffering from B-12 deficiency and because you probably are pre-diabetic, that's why you have the PN.

Your B-12 level IS WAY OFF. It should be over 1000 (the standard acceptability rate for B-12 is WAY TOO LOW).

I take Methylcobalimin 5000 every morning. It stopped my burning around 90%. Now I only burn if the weather goes nuts, or my son calls me (don't ask).

Honestly, your B-12 level is beyond belief.

But don't bother to see if your doctor agrees with this. THEY DON'T KNOW SQUAT ABOUT B-12 LEVELS.

Do some research on this forum about B-12.

You will LEARN MUCH.

Good luck hon.

Hi

In our community we have all suffered simular experienced to what you are describing. There is a test that is often never performed, but is very accurate. It is called a Strickler Panel CD57 NK by Labcorps. It is a blood test that measures your body's immunization response to Lyme Disease.

Lyme disease and its coinfections can cause multisystem organ and body failures. It can demyolinize the nerves so you have pain. There are so many things that can happen that it would take a long time to write everything down. So you can start your looking at the International Lyme and Associated Disease website.

If you have questions, I am willing to talk with you.

Lyme sufferer

-with a few other comments.

You may well be insulin resistant, but pre-diabetes/diabetes, while a common cause of small-fiber neuropathy--which, by the way, standard nerve conduction studies/EMG's will NOT detect (those can only see gross damage to larger myelinated nerves, not the smaller ones that subsume the sensations of pain and temperature)--usually doesn't present this acutely.

There's a higher likelihood of this being related to B12 deficiency. Given what you've written about the H-pylori findings, and the drugs you've taken, many of which will deplete B12 (which I suspect, for whatever reason, you're not storing well, and with that bacterial infection, probably not breaking out of food well), it would be very important to get homocysteine and methylomaic acid (MMA) tests; these are not perfect, but are far more accurate measures of your actual B12 metabolism than the serum B12 level (and yes, that 209 level is way too low).

The other thing that springs to mind is celiac/gluten sensitivity. This can cause neuropathy all by itself, or lead to it secondarily through malabsoption of B12, iron, magnesium. I notice you've not mentioned serum iron/ferritin levels having been tests--which should be done even if you are not showing signs of anemia (especially given that B12 level)--nor have you mentioned serum anti-gliadin IgG, IgA, total IgA and anti-transglutaminase IgA levels (that's a beginning in checking for gluten problems).

I'm not a doctor, but like many others here, have some experience with medical puzzles--and you haven't more than scratched the surface of possible testing yet. What I've aforementioned, based on the tests you've written about, seems a logical next step.

Could it be due to the fact that I’m pre-diabetic?
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Absolutely it can, my burning feet was caused by prediabetes & low b12, your b12 is very low.
Getting rid of any excess weight and some exercise can reverse prediabetes, and of course stop the progression of fully blown diabetes, i would get a good quality multi B tab and take it every morning and get some b12 methylcobalamin , i take 1 -5 mg every day on a empty stomache [ works better that way ], vitamin B1 taken in divided dosages during the day can help some with the burning, but its real important to get rid of any excess weight, you can heal if you do the right thing.
good luck
Brian