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Old 04-17-2017, 12:47 AM   #1
Notsohappy
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Hello everybody!

First, excuse me for my english. Second, I wanted to share my experience with you.
I am 42 y.o. male. About one year ago I started to feel burning in the wrists and in the ankles on both sides. I also started to feel slight burning on the
left side of the face including the chin. It persisted for a week or two so I went to the doctors.Numerous tests have been done (surely not all possible tests but many of them) and nothing abnormal was revealed. Then the neurologists claimed that my problem is just an anxiety (most of you know well that BS pattern with many health professionals). At that time
I did not resist to the diagnosis (although I was deeply suspicious about it). After all - the anxiety problem is obviously “better” than many of the “real”
diseases. The time kept passing by. Slowly my symptoms kept deteriorating. I started to feel numbness in hands and feet. Additionally, the burning
sensation ascended in all four extremities. After that for a period of 8 months I had the burning and numbness slowly (or not so slowly) progressing.
If it goes on this way - I might find myself seriously disabled quite soon.
That is it about it.
I am really disoriented at the moment. I know for sure that something wrong happens to me but I have no idea what is that. Any additional visits to the doctors only confirm my opinion about the modern medicine: they know almost nothing, they are mainly profit motivated and they don’t really care. The best they can do for me is to name my problem as an “idiopathic” (which actually means “we have no idea” diagnosis).
I have a 4 year son to take care of and I am worried about my future. The disability is slow aggravating (or I just think so) and I feel kinda lost.
Trying to get the answers on the internet is also a bad idea. I don’t have any knowledge in medicine.
Still I want to ask for an advise from anybody who might have an idea about what happens to me. Even more important - what course of action should I take? I must try everything I can to stop or , at least, slow down this pathological process. I feel that in situation like mine any possible treatment should be tried even although there is not any certain diagnosis available at the moment. But how can I explain this to the health professionals ? They need a diagnosis before taking ANY action.And without it they just send me on my way as if nothing really happens. And unfortunately - it does happen. Every single day.
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Old 04-20-2017, 04:56 PM   #2
janieg
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Notsohappy,

Welcome, but I'm sorry you are here.

Your English is fine and easy to understand, so don't worry.

Your story is very familiar, and many of us know it very well, myself included.

Can you tell us what kinds of things they have tested you for?

Janie
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Old 04-20-2017, 07:07 PM   #3
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Hi notsohappy.
I'm with Janie and could benefit from knowing what tests you've been given so far. Also, prior to these symptoms were you on any antibiotics? Certain one have been proven to cause neuropathy. Certain medications also.

Hang in there. I'm sure more posters will chime in especially when you provide more information.
carol
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Old 04-23-2017, 12:01 AM   #4
Notsohappy
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Quote:
Originally Posted by janieg View Post
Notsohappy,

Welcome, but I'm sorry you are here.

Your English is fine and easy to understand, so don't worry.

Your story is very familiar, and many of us know it very well, myself included.

Can you tell us what kinds of things they have tested you for?

Janie

Hi Janie and Pinkynose,

Thank you for replies.

The list of tests is quite long:

MRI brain and then MRI brain + spinal cord, NCS (twice), VEP, SSEP, blood tests like : immunofixation electrophoresis, paraneoplastic autoantibodies, many of other conventional blood tests (like ANA etc.).
The only test which showed abnormality is the one named QST. This showed that I have a diminished sense of vibration and cold touch in my limbs. But it is quite a subjective test and not so widely accepted, I think. And actually it only confirms what I feel for one year already: sensory problems in my feet and hands. The cause is still a mistery.
Of the numerous blood tests there were only several slightly deviated from the normal values:
1) Vitamin D is 23 (which is lower than the norm but not that much).
2) Vitamin B6 - elevated 2 times more than the highest normal value. This one is weird since I never took any B6 supplements. I tried to search for the information on the internet but it is really confusing. The neurologist did not get interested in this result at all. Recently I repeated the test again and the value is roughly the same - 2 times more than the highest normal value.
3) Homocysteine. The result of the first test done 8 months ago was 15.27 (which is slightly more than the normal values). I did the test again one week ago and it was already at 17.3. Homocysteine is one of the markers for vitamin B12 deficiency. My B12 serum result was at 430 about 8 months ago. I did B12 test again recently and awaiting for the results at the moment.
4) My hematocrit level is showing 39 (with 40 being a normal value already).

That is it about the blood test's abnormalities.

Pinkynose , answering your question about antibiotics - you guessed it: I did take the Levofloxacine drug for the infection in February 2016. As I remember there were 10 tablets of which I only took 7. My neurological symptoms started two and a half months after this. So I have no idea if these can be related.

Again , thank you for your replies and wish you all being healthy. Any additional advice will be highly appreciated.
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Old 04-23-2017, 07:49 AM   #5
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Notsohappy, there is some evidence that unusually high Vitamin B6 levels are a risk factor for sensory neuropathy though I don't know if this might apply to you.

The Recommended Dietary Allowance for it is 1-2 mg/day for adults and its Tolerable Upper Intake Level is 100 mg/day.

The more detailed information here might help you in this context Dietary Supplement Fact Sheet: Vitamin B6 — Health Professional Fact Sheet.
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Old 04-23-2017, 09:43 AM   #6
Notsohappy
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They say one cannot consume too much B6 with the food. And I don't remember myself ever supplementing with B6. And yes, I know that an excess of B6 is toxic for the nerves. I read one theory that too much B6 in serum means not enough of it in the tissues. So they advice to take the big doses of B6 to get it into the tissues. And what about more toxicity for the nerves?
Also information on B6 is somewhat contradicting: it causes neuropathy when you have too much of it but it also causes neuropathy when you are deficient. Sigh...
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Old 04-23-2017, 12:58 PM   #7
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Too high B6 might not be what you think:

The Cause of Vitamin B6 Toxicity is Not What You Think

The suggestion is to take activated B6 called P5P to help.
People may not convert B6 pyridoxine, to active P5P, for several reasons.
1) genetic failure of pyridoxal kinase in the liver

2) low levels of B2 riboflavin which is a cofactor of pyridoxal kinase,

3) use of certain drugs, including caffeine which block conversion.
Near the end of this paper (starting at page 63), is a list of drugs they found so far that block pyridoxal kinase activity. The list is growing by the year, as more drugs are tested for this effect.
http://scholarscompass.vcu.edu/cgi/v...07&context=etd

Suffice it to say something is preventing activation of B6 to P5P for some people, so they test high as the INactive B6 builds up in the body.
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Old 04-24-2017, 12:00 AM   #8
Notsohappy
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Hi MrsD,

Actually the name of the B6 test I have done is:

Vitamin B6 (Pyridoxal-5' phosphate (PLP))

If I understand it right - this is already an active P5P form of the B6 found in excess in my blood serum. Correct me if I am wrong. Thank you.
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Old 04-24-2017, 01:38 PM   #9
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You mentioned taking extra B6, so I think you should use
P5P supplement form.

This topic is still unresolved IMO. You can Google many medical sites including those with real doctors who answer questions.

I found one doctor who just said stop eating things/ supplements with B6 in them. I saw another who said elevated serum B6 comes from dying liver cells.
There are patients claiming levels 10x normal down to twice normal. There are many people over the years asking this question and I have still have not seen definitive answers to this question.

The neuropathy of toxicity (typically from high dose use for long periods of pyridoxine) is more affecting of proprioception and gait.

This is a list from Medscape:
Quote:
Manifestations of vitamin B6 toxicity may include tachypnea and/or the following neurologic effects:

Sensory neuropathy (eg, burning pains, paresthesias, perioral numbness)
Progressive sensory ataxia
Impaired proprioception
Impaired vibration sense
Diminished tendon reflexes
from: Vitamin B6: Reference Range, Interpretation, Collection and Panels

These symptoms are different and more serious than sensory neuropathy.

Sometimes labs make mistakes. Sometimes results are confounding . It is possible that if the specimen is mishandled, the red cells may lyse (burst) and the contents spill into the serum causes false elevations in the tests. Potassium is another nutrient that can give false elevations due to lysed cells.

Red blood cells do convert pyridoxine to P5P so if they burst after drawn from the subject, they would release P5P into the serum.
Conversion of vitamin B6 compounds to active forms in the red blood cell

So I do think that the test may have confounding weaknesses, involving lab errror or mishandling of the sample.
Doctors don't usually respond to elevated B6 levels, but only to the very low results.

Look at your diet. Energy drinks, energy bars, breakfast cereals can contain substantial B6.

At this point the B6 is probably not an issue for you.

Using a methylcobalamin supplement may be useful for you,
since your test was marginally low. 400 is the new cut off for deficiency now.

And I'd consider getting the DNA MTHFR test. It may reveal an error in metabolism for you.
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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Old 04-28-2017, 04:25 PM   #10
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Hi Notsohappy. I found your drug on this list FDA Drug Safety Communication: FDA requires label changes to warn of risk for possibly permanent nerve damage from antibacterial fluoroquinolone drugs taken by mouth or by injection
Quote:
Originally Posted by Notsohappy View Post
Hi Janie and Pinkynose,

Thank you for replies.

The list of tests is quite long:

MRI brain and then MRI brain + spinal cord, NCS (twice), VEP, SSEP, blood tests like : immunofixation electrophoresis, paraneoplastic autoantibodies, many of other conventional blood tests (like ANA etc.).
The only test which showed abnormality is the one named QST. This showed that I have a diminished sense of vibration and cold touch in my limbs. But it is quite a subjective test and not so widely accepted, I think. And actually it only confirms what I feel for one year already: sensory problems in my feet and hands. The cause is still a mistery.
Of the numerous blood tests there were only several slightly deviated from the normal values:
1) Vitamin D is 23 (which is lower than the norm but not that much).
2) Vitamin B6 - elevated 2 times more than the highest normal value. This one is weird since I never took any B6 supplements. I tried to search for the information on the internet but it is really confusing. The neurologist did not get interested in this result at all. Recently I repeated the test again and the value is roughly the same - 2 times more than the highest normal value.
3) Homocysteine. The result of the first test done 8 months ago was 15.27 (which is slightly more than the normal values). I did the test again one week ago and it was already at 17.3. Homocysteine is one of the markers for vitamin B12 deficiency. My B12 serum result was at 430 about 8 months ago. I did B12 test again recently and awaiting for the results at the moment.
4) My hematocrit level is showing 39 (with 40 being a normal value already).

That is it about the blood test's abnormalities.

Pinkynose , answering your question about antibiotics - you guessed it: I did take the Levofloxacine drug for the infection in February 2016. As I remember there were 10 tablets of which I only took 7. My neurological symptoms started two and a half months after this. So I have no idea if these can be related.

Again , thank you for your replies and wish you all being healthy. Any additional advice will be highly appreciated.
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Last edited by pinkynose; 04-28-2017 at 04:31 PM. Reason: Addition
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