[anabanana]

Hello Everyone who's been down this dark road!

I am 36 and for the past 2 years I have had muscle twitching (fasciculations) increasing as the time has gone by with increasing muscle weakness. I have also developed pain in feet over time as well as twitching in the feet accordingly (pressure induced) and random jabbing sensations, vibrations in feet/legs when on them (no diabetes). The only thing that slightly relieves my foot pain is thick soled, cushioned footwear, which for me screams NEUROPATHY. I have fluctuating breathing and dizziness/off balance issues too from the beginning.

I have had many general blood tests, brain/cerv mri and EMG/NCV at a ASL/neurology clinic, supposedly "normal" EMG/NCV. No answers so far...

They told me I have no motor neuron disease signs, and DRS were not very helpful nor interested in my condition/symptoms progressing. I am the driving force here...

I am here desperately trying to find some help from all of you who've been there, because with all my progressing symptoms, it is becoming clear to me that this is some kind of neuropathy, even if the neuro's don't see any neuropathy on electrodiagnostic studies.

-Can EMG/NCS not pick up on all types neuropathies (aside from small fiber)?
-Could serum neuronal antibody tests provide answers?
-Could Lumbar puncture provide great insight?

I am looking to find like minded people with personal experience and advice, as I am fighting this alone every step of the way and can't do it anymore, and need a lot of support.

I need advice on laboratories that provide these neuronal antibody tests: Athena vs Quest and how to go about getting a doctor to run these tests, with a negative EMG/NCV. Reading online, I know all too well that EMG/NCS are not the end-all for neuropathies. Anyone with insight into this, please contact me.

Thank you for reading and hope you can help me,
Ana

[mrsD]

Welcome to NeuroTalk:

Please visit our subforum here on neuropathy:

http://neurotalk.psychcentral.com/forum119.html

Lots of information on testing, causes, healing supplements, CMT testing.

The regular forum is mostly for asking questions, and conversation:
http://neurotalk.psychcentral.com/forum20.html

There are many triggers for PN... common drugs, toxins, and even that vaccine you got because it was advertised on TV or elsewhere.

The CMT thread on the subforum explains hereditary types, and gives links for you to study.

You need to check nutrient levels for B12 and Vit D and get the numerical result instead of "normal" comments from your doctor. Doctors will test but they don't often interpret the results accurately.
B12 and Vit D are the most commonly low in many people.

Also magnesium may help. This can cut down on twitching/cramping and other sensations. A good oral form (not Oxide, which is not absorbed) or topical lotion type like Epsom-IT, or Kirkman magnesium cream, can often help quite a bit. Up to 70% of Americans are low in magnesium and blood testing is too crude to show it except for extreme values.

What your doctor can do for you testing wise is limited, as well as treatments. So do visit the links I gave and expect to read some...it is 6+yrs of accumulated knowledge and experience.

[anabanana]

Thanks for the links, will do:
There are many triggers for PN... common drugs, toxins, and even that vaccine you got because it was advertised on TV or elsewhere.
I've tested for drugs, toxins, and don't get vaccines-negative

You need to check nutrient levels for B12 and Vit D and get the numerical result instead of "normal" comments from your doctor. Doctors will test but they don't often interpret the results accurately.

My B12 is 700(mid-range) and D is 60 (optimal range).

Also magnesium may help.
I've tried that, the best absorbable type, and it didn't help

What your doctor can do for you testing wise is limited, as well as treatments.
I don't understand your comment about DRS: A doctor should test a patient for all aspects of neuropathy, because if it is an autoimmune triggered neuropathy, IVIG and other treatments are available for those patients.
Thanks!

[mrsD]

I would like to know how you tested for "drugs"?
I am not meaning illegal drugs...

I am talking about Cipro, Levaquin, Avelox, Flagyl, Tindamax, statins, and Zyvox, being used now, recently or in the past.
I don't know of any "tests" for these.

There are many drugs used on RX commonly that cause PN:

http://neurotalk.psychcentral.com/thread92116.html
Some of these drugs are used for bladder infections, and upper respiratory infections, including sinuses.

Also solvents from hobbies, or the workplace, or even the solvents that fume out of dry cleaned clothes, have been implicated in PN. Gardeners, who use pesticides and herbicides also have risks.
Outgassing formaldehyde is also problematic in new buildings and homes.

There are over 100 causes of PN ... the trick is to find yours.
When all is said and done, if you have dorsal root damage, there may not be much you can do about it. (until the research catches up with it).

Yes autoimmune neuropathy may be treated with disease modifiying drugs..(DMARDS). IVIG and Rituxan are expensive last resorts.
Some of our posters have Sjogren's syndrome, and struggle with that.
Not all autoimmune suppressing drugs work well, however.

[anabanana]

Originally Posted by mrsD

I would like to know how you tested for "drugs"?
I am not meaning illegal drugs...I am talking about Cipro, Levaquin, Avelox, Flagyl, Tindamax, statins, and Zyvox, being used now, recently or in the past.

Oh, I see (I was thinking more supplements, vitamins, etc) I've actually never taken any of the ones you mention above, except cipro, a long time ago and very short term(UTI 2 times). That was over 5 years ago and they never gave me any symptoms. Either way, it wouldn't matter, because you can't test for any of these. I don't take/ never took any drugs, because I was always healthy, until this.

Also solvents from hobbies, or the workplace, or even the solvents that fume out of dry cleaned clothes, have been implicated in PN. Gardeners, who use pesticides and herbicides also have risks. Outgassing formaldehyde is also problematic in new buildings and homes.

Well, I don't have new home/bldg. don't dry clean, no exposure to chemicals from hobbies/ work(stay at home), don't have garden. I am really chemical conscious in products and food.

There are over 100 causes of PN ... the trick is to find yours.
When all is said and done, if you have dorsal root damage, there may not be much you can do about it. (until the research catches up with it).

And wouldn't dorsal root damage show up on EMG/ NCV?

Yes autoimmune neuropathy may be treated with disease modifiying drugs..(DMARDS). IVIG and Rituxan are expensive last resorts.
Some of our posters have Sjogren's syndrome, and struggle with that.
Not all autoimmune suppressing drugs work well, however.

But if someone has autoimmune related neuropathy (ex: sjogrens, cidp, mmn, etc), why would they use IVIG/ Rituxan as last resort, when it would potentially stop their progression? What else is there, aside from IVIG/ Rit.? I just don't see why this would not be the first form of treatment to see a response, and even using IVIG as a diagnostic tool, to see if indeed it is a autoimmune triggered neuropathy?

Thanks!

[mrsD]

The only test that shows dorsal root damage that I know of now, is the new MRI discussed on our subforum ... it is on page one.

IVIG is very very expensive and so is Rituxan. Most insurances will not pay for it unless other avenues are ineffective.

We are talking about $6000+ a month, or more depending on how many treatments are done that month.
IVIG has risks... also. There is an IVIG thread on the subforum link I gave you.

There are several avenues to explore with supplements:
1) you already have done the most common one of B12 and Vit D.

2) mitochondrial support nutrients

3) anti-inflammatory and antioxidant approach.

Also I'd suggest you have testing for gluten intolerance and Celiac, as gluten intolerance can be acquired, and can cause nerve damage. Going gluten free can help these patients.

https://sites.google.com/site/jccglutenfree/
more at this site.

You just have to do some homework at the PN forum. There is no substitute for that.

Post on the main forum there also, as we have some autoimmune posters with lots of experience there.

[anabanana]

[QUOTE=mrsD;893733]The only test that shows dorsal root damage that I know of now, is the new MRI discussed on our subforum ... it is on page one.

IVIG is very very expensive and so is Rituxan. Most insurances will not pay for it unless other avenues are ineffective.

And what other avenues are they expecting to be explored before?

I'm really curious about the benefits of getting neuronal antibody testing, any insight into that?


2) mitochondrial support nutrients
what would those be?

3) anti-inflammatory and antioxidant approach.
what would that be?

Also I'd suggest you have testing for gluten intolerance and Celiac, as gluten intolerance can be acquired, and can cause nerve damage. Going gluten free can help these patients.

I've tested negative for antibodies and endoscopic biopsy

Thanks for the advice,
Ana

[mrsD]

See you at the PN forum!