Looking for an advice.
 

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.

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 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

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.

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.

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...

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.

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.

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:
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.

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

Hi pinkynose.

I am aware of the fact that you mentioned. Unfortunately , there are not any tests that can prove that what happens to me is induced by fluoroquinolone drugs. So it is just one of the many options for me. Moreover, there are not any accepted treatments existing for this condition.
A little bit off topic: it really amazed me that the medicine prescribed by the doctors every day can be so dangerous for one's health. When I checked my medical history recently I found out that I was prescribed fluoroquinolone antibiotics 2 times throughout year 2015 and one more time in February 2016. Every time for quite the regular infections, nothing really dangerous for the health. People should be informed better about the big risks involved with this antibiotic's group.

Big Pharma is very powerful in the US.

Bitter Pills: Inside the Hazardous World of Legal Drugs: Stephen Fried: 978553378528: Amazon.com: Books
I bought this book when it came out, as I was very interested in the topic and watched this 3rd tier drug leap into first tier just because sales reps encouraged its use.

Back in the late 1990's it was mostly used for prostate and urinary infections. But this family of drugs got approved for community acquired pneumonias and that became the golden goose.

The author's wife developed a seizure disorder from Floxin. And even Oprah's show had a piece on these drugs when one of her
producers had serious brain effects from them.

The brain effects were known right from the get go...as there were warnings in the initial drug insert information to not give high doses to elderly patients. The PN effects became more visible as time passed.

The only people I think who were oblivious were the doctors.
They were heavily gifted by sales reps to prescribe lots of fluoroquinolones, and they used their gifts mightily. Even today as you experienced there are doctors out there still prescribing these drugs willy nilly. The recommendation is that they should be last resort treatments.

But the word is getting out slowly. Last summer my hubby had a cellulitis from a spider bite, and they did not give him a fluoroquinolone in the ER.

The late Dr. Jay Cohen MD suggested online on his website that magnesium supplements may help. You can Google him and see if his site is still available today.

In most cases with fluoroquinolones people tell about almost immediate reactions and the symptoms are usually much more diverse than mine. My problems started more than 2 months after I was treated with Levofloxacine. Still, I don't rule out that possibility for myself.

The fluoroquinolones also cause tendon ruptures, and this risk goes on for months and months after use has stopped. You are not out of the woods yet in that regard. Understanding of the effect remains unexplained.

Also people vary in their reactions to these drugs. Some never have a problem and others are severely impacted.

I paid attention that my problems have a "flare up" pattern. Unfortunately, every flare up seems to be worse than the one before it. Can this kind of pattern hint somehow on the etiology of the problem? What causes the "disease" 's symptoms to come and then subside for every 7-10 days?

I read about it somewhere:

"*a FLARE can be related to natural (but poorly understood) fluctuations in the immunological processes that drive inflammation."

So can my problem be related to the immunological processes in the body?

P.S. I know that what I write and ask is very simplicistic or even stupid but as I told before my medical knowledge is at the lowest level possible.

Notsohappy, I do not think that you are stupid.

Often inflammatory responses have an immune system involvement. The immune system is very complicated; many different kinds of cells, many different proteins, all interacting with each other in poorly-understood complex ways which can be affected by things like prescription drugs.

A specific example of this is a sadly now-deceased friend of mine who lived with Crohn's Disease for many years. Crohn's Disease is a primarily inflammatory condition with some immune system involvement.

She quite often had flares which neither she nor her very good health care team could explain.

Sometimes keeping a journal of what you eat,what you do, exercise,how you feel, will reveal a trigger to flares.

Yes, I try to to do that. Recently I was on one month strict gluten-lactose free diet. Healthy overall but made nothing to my symptoms. It looks like what happens to me is a kind of self-dependent process inside my body. The only two things that I think make my sensory problems worse is an alcohol and even the minimal physical activity. So I avoid both now and not so happy about it (well, alcohol is not something one should seriously miss, but regarding the physical activity it is a real personal disappointment for me).

That is a good beginning.

I along with many others here, find that barometric lows that come with storms are very flaring of pain. So record your daily weather in your journal. I also flare severely with processed (including restaurant) food because MSG is common in many foods in the US.

Some people here have stated that sugar also flares them.
Also some people have posted here and on the addiction forum that alcohol can flare them.