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-   -   Best way to find a solution? My story.. (https://www.neurotalk.org/peripheral-neuropathy/217763-solution-story.html)

Tunaboy 03-22-2015 11:01 AM

Best way to find a solution? My story..
 
Hey everyone!

After lurking around here for the past week, I've come to the conclusion that you need to be very proactive in finding solutions instead of just relying on the doctor's word.

I'm 35 yrs old and it all began after wisdom teeth removal 3 months ago. I was under local anesthesia and also given intravenous steroids to reduce inflammation. Post-op I took motrin and a 10 day course of Amoxicillin. About a week later, I noticed the top of my right foot was partially numb, felt like it was asleep. It never went away and the feeling slowly progressed up my calves. I just thought it would go away until I started getting tingles and buzzing in my left foot. I went to my primary and did some bloodwork. Everything came back "normal" and my B12 levels were around 1500. Then went to a neurologist. I did an EMG and was told I probably damaged my perenial nerve and that I have some foot drop, but she didn't explain why my left leg was having the same symptoms. She just prescribed me 60mg dose of prednisone to take for 3 days, then gradually taper off until day 12. After doing lots of research and finding out that this drug was no joke and the dosage was rather high, I skipped out on taking it.

Fast forward a month later, the tingles and buzzing sensations seem to be spreading up my legs, my hands, arms, part of my back/shoulder. My legs feel weaker and my knees have a locked sensation. The pain isn't bad, it's mainly the "asleep" feeling and some slight burning occasionally. It's more of an annoying/uncomfortable feeling. I went to another neuro last friday and i'm having another EMG done in a couple days. Yesterday I felt noticeably more fatigued, loss of appetite, and general feeling of being sick.

After doing lots of research, I definitely think I have some form of PN. I'm not sure if its SFN, LFN, MMN, CIDP, etc. What tests should I request be done? How can I make sure they are being as thorough as possible? Like everyone on here, I want to find a solution as quickly as possible to hopefully prevent it from getting worse. It's very discouraging that it's taking people months and years to be diagnosed properly. Should I be seeing multiple neurologists at once? I am thinking of finding another one just to get a second opinion. Any advice would be greatly appreciated!

anon050715 03-22-2015 12:41 PM

Quote:

Originally Posted by Tunaboy (Post 1130974)
Hey everyone!



After lurking around here for the past week, I've come to the conclusion that you need to be very proactive in finding solutions instead of just relying on the doctor's word.



I'm 35 yrs old and it all began after wisdom teeth removal 3 months ago. I was under local anesthesia and also given intravenous steroids to reduce inflammation. Post-op I took motrin and a 10 day course of Amoxicillin. About a week later, I noticed the top of my right foot was partially numb, felt like it was asleep. It never went away and the feeling slowly progressed up my calves. I just thought it would go away until I started getting tingles and buzzing in my left foot. I went to my primary and did some bloodwork. Everything came back "normal" and my B12 levels were around 1500. Then went to a neurologist. I did an EMG and was told I probably damaged my perenial nerve and that I have some foot drop, but she didn't explain why my left leg was having the same symptoms. She just prescribed me 60mg dose of prednisone to take for 3 days, then gradually taper off until day 12. After doing lots of research and finding out that this drug was no joke and the dosage was rather high, I skipped out on taking it.



Fast forward a month later, the tingles and buzzing sensations seem to be spreading up my legs, my hands, arms, part of my back/shoulder. My legs feel weaker and my knees have a locked sensation. The pain isn't bad, it's mainly the "asleep" feeling and some slight burning occasionally. It's more of an annoying/uncomfortable feeling. I went to another neuro last friday and i'm having another EMG done in a couple days. Yesterday I felt noticeably more fatigued, loss of appetite, and general feeling of being sick.



After doing lots of research, I definitely think I have some form of PN. I'm not sure if its SFN, LFN, MMN, CIDP, etc. What tests should I request be done? How can I make sure they are being as thorough as possible? Like everyone on here, I want to find a solution as quickly as possible to hopefully prevent it from getting worse. It's very discouraging that it's taking people months and years to be diagnosed properly. Should I be seeing multiple neurologists at once? I am thinking of finding another one just to get a second opinion. Any advice would be greatly appreciated!


Sounds like me. I'll be 35 in June and this neuropathy started out of the blue. Welcome bud.

Kitt 03-22-2015 12:52 PM

Welcome Tunaboy. :Tip-Hat:

Tunaboy 03-22-2015 01:28 PM

Quote:

Originally Posted by UTGrad (Post 1130988)
Sounds like me. I'll be 35 in June and this neuropathy started out of the blue. Welcome bud.

I read your thread as well. Scary how life can change in an instant. Hang in there!

Quote:

Originally Posted by Kitt (Post 1130992)
Welcome Tunaboy. :Tip-Hat:

Thank you :)

anon050715 03-22-2015 01:45 PM

Quote:

Originally Posted by Tunaboy (Post 1131001)
I read your thread as well. Scary how life can change in an instant. Hang in there!







Thank you :)


Same to you!!

So how long has it been for you since the start of the symptoms to today? I'm at day 36. I've actually started a count up app on my iPhone lol.

To be honest I was getting weird zaps in the affected foot for a while now but it was so random and transient I brushed it off.

Tunaboy 03-22-2015 01:55 PM

Quote:

Originally Posted by UTGrad (Post 1131005)
Same to you!!

So how long has it been for you since the start of the symptoms to today? I'm at day 36. I've actually started a count up app on my iPhone lol.

To be honest I was getting weird zaps in the affected foot for a while now but it was so random and transient I brushed it off.

It's been 11 weeks since I first noticed the numbness in my right foot. I brushed it off as well thinking I could live with a little numbness and that it would go away. It wasn't until I started feeling it in my left foot I became concerned. This past week is when I started noticing it more in my arms, back, and shoulder. Also, my legs feel weaker, kinda like jello.

mrsD 03-22-2015 03:35 PM

When you had the teeth removed, did they give you Nitrous Oxide first before the other anesthesia?

My son had that done, that way.

A big blast of Nitrous can precipitate PN in some people... it deranges the B12 chemisry.

This is an old study...
Quote:

Arch Surg. 1993 Dec;128(12):1391-5.
Neurologic degeneration associated with nitrous oxide anesthesia in patients with vitamin B12 deficiency.
Flippo TS1, Holder WD Jr.
Author information
Abstract

Vitamin B12 (cyanocobalamin) is an integral component of two biochemical reactions in man: the conversion of L-methylmalonyl coenzyme A into succinyl coenzyme A and the formation of methionine by methylation of homocysteine. The transmethylation reaction is essential to DNA synthesis and to the maintenance of the myelin sheath by the methylation of myelin basic protein. Active vitamin B12 contains cobalt in its reduced form (Co+). Nitrous oxide produces irreversible oxidation to the Co++ and Co forms that renders vitamin B12 inactive. Five cases (four from the literature and one new case) are presented in which patients unsuspected of having vitamin B12 deficiency developed subacute combined degeneration of the spinal cord following nitrous oxide anesthesia. Patients with vitamin B12 deficiency are exceedingly sensitive to neurologic deterioration following nitrous oxide anesthesia. If unrecognized, the neurologic deterioration becomes irreversible and may result in death.

PMID:
8250714
[PubMed - indexed for MEDLINE]
from http://www.ncbi.nlm.nih.gov/pubmed/8250714

also:
http://www.ajnr.org/content/19/5/894.full.pdf

It is also possible that the Amoxicillin disrupted your GI bacteria enough to change something for you. Do you recall any loose stools or diarrhea from it? Replacing some bacteria with a good Kefir (like Lifeway which has 12 different strains)...may help you restore yourself. Disturbances of GI bacteria are a hot topic right now and suggested for many neurological problems today in the research. Yogurt typically does not have many active cultures, so Kefir would be better. I think this is definitely worth a try.

Tunaboy 03-22-2015 04:15 PM

Quote:

Originally Posted by mrsD (Post 1131030)
When you had the teeth removed, did they give you Nitrous Oxide first before the other anesthesia?

My son had that done, that way.

A big blast of Nitrous can precipitate PN in some people... it deranges the B12 chemisry.

This is an old study...

It is also possible that the Amoxicillin disrupted your GI bacteria enough to change something for you. Do you recall any loose stools or diarrhea from it? Replacing some bacteria with a good Kefir (like Lifeway which has 12 different strains)...may help you restore yourself. Disturbances of GI bacteria are a hot topic right now and suggested for many neurological problems today in the research. Yogurt typically does not have many active cultures, so Kefir would be better. I think this is definitely worth a try.

I don't think I was given NO, but I can find out. I have a feeling it was the Amoxicillin or combination of that and anesthesia that set it off. I don't recall having bowel issues afterwards. So just start eating Kefir products? I was taking the pearl probiotic months ago. Maybe I should start those up again.

mrsD 03-22-2015 04:20 PM

Yes, do find out...

Lifeway Kefir is very good...tastes delicious and is not expensive.
It has 12 live strains in it. It is in many stores now...even Costco.

A supplement form that is also good is this:
http://www.amazon.com/gp/product/B00...?ie=UTF8&psc=1

I found it on a review page that listed the top 10 probiotics.

tkerlinger 03-22-2015 04:24 PM

Did you get a flu shot last fall.........there may be a connection!

Tom K


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