New User. Questions.
 

Hello everyone.

I've been a bit of a lurker over the past year but not really taken the time to register and post anything. Apologize in advance for what I'm sure is going to be a long post :) I've enjoyed reading through so many of your posts, and now as my issues have progressed, I've decided I am going to need some additional help. Hoping that many of you that have already been going through this can help direct me.

I have been dealing with what my neuro is calling an "idiopathic progressive polyneuropathy" for nearly 3 years now. It began 2.5 years ago and started with numbness and tingling in my hands and arm pain. Diagnoses at that time was bilateral ulnar nerve injury after a fall. NCS indicated mild ulnar nerve problem. Ortho didn't recommend surgery as it didn't present as something which surgery would help.

Over the next year or so, my symptoms worsened significantly. The arm problems were much worse and I began to have issues with both of my legs and feet and the right side of my face. As things worsened, I finally convinced the neuro to do another NCS which suggested a progressing neuropathy to include what is now moderate findings with the ulnar nerves and mild findings with the legs. Not sure if the right side of my face is the same problem or something entirely different. I have issues on the right side of my tongue now as well. I also have issues with Gastroparesis and digestive issues(failed one emptying study and passed one) that are now a huge problem to go along with the pain, numbness, tingling in my hands, arms, feet, legs and face. It now feels like the face issue might be progressing to include both sides as I've had some unusual feelings in the left lower lip lately.

Idiopathic reasons are not very comforting but I realize I might never really know what is causing this. Of course, I'd like to find out, if possible, so I could potentially stop this from getting worse. My hands and right side of face now have involuntary movements as part of the problem. The only thing that has shown up on my exhaustive list of blood work and imaging studies (MRI's and CT's of brain and cervical region) is a mildly high fasting blood glucose (I think it was 94) and failed glucose tolerance test (within points of a normal high limit). My endo is not very concerned with it. Medications haven't done very much in the way of relief (lyrica was most recent attempt).

I apologize for the very long post. If anyone has thoughts on what this could be, suggestions for future testing or any type of input, I'd greatly appreciate it!!! Thank you :)

Welcome to NeuroTalk...

I have a few questions:

How old are you? Do you take statin drugs for cholesterol or have had antibiotics from fluoroquinolone family in the recent past, or Flagyl (metronidazole).

Have you been evaluated for MS? Had an MRI to exclude it?

Have you had your B12 measured and is it over 400pg/ml?
Vit D also...? goal for that is 50.

Do you know your A1C? Do you drink alcohol regularly?
Do you get vaccines?

Have you considered a food intolerance like gluten intolerance?
Also nightshades can be problematic for some people.

Are you exposed to toxins, pesticides or fungicides in your job or hobbies? Solvents? Like cleaning up greasy oily hands?

Did your doctor test you for a heavy metal load? (mercury, lead, cadmium, arsenic? )

PN may be from some environmental assault or exposure.
Or it can be from a metabolic process going on in your body (autoimmune, diabetes, bone marrow disorders)
Or compressive issues in the spine pinching nerves.
Or it can be hereditary...for which there is not much you can do but avoid triggers listed for it. (do you have relatives with nerve damage? )

I'll be leaving Fri am for a long hiatus here of 2 months, so if you can answer before Thurs night, I can possibly point you in a direction to further investigate. Not all doctors do all the tests available, unfortunately.

Welcome ctknoxville. :Wave-Hello:

First, thank you VERY for your reply. :)

I'll do my best to answer:

How old are you?
43

Do you take statin drugs for cholesterol or have had antibiotics from fluoroquinolone family in the recent past, or Flagyl (metronidazole).
No

Have you been evaluated for MS? Had an MRI to exclude it?
Had MRI. Everything normal.

Have you had your B12 measured and is it over 400pg/ml?
Vit D also...? goal for that is 50.
Had previous issues with Vit D but it's good now. B12 is ok.

Do you know your A1C?
Unfortunately, I'm not sure about A1C. I'll try to find out. I know they did test but didn't say anything about it.

Do you drink alcohol regularly?
None (although I might start if this keeps up!)

Do you get vaccines?
Yes

Have you considered a food intolerance like gluten intolerance?
I had workup for celiac. All tests came back ok. Maybe I should try to eat gluten free for awhile just to see?

Also nightshades can be problematic for some people.
Ok. Thanks. Didn't know that.

Are you exposed to toxins, pesticides or fungicides in your job or hobbies? Solvents? Like cleaning up greasy oily hands?
I'm a computer consultant so I did office work before all of this happened. Haven't been able to work regularly now for awhile unfortunately. How long could those types of things be a problem? I paid my way through school in manufacturing environment, and exposure was common to many solvents, but that's been 15 years.

Did your doctor test you for a heavy metal load? (mercury, lead, cadmium, arsenic? )
Normal from what I remember.


One of the neuros suggested an autonomic neuropathy while the other believes it's peripheral. I definitely don't understand although I'm trying to learn as I go now. Thank you very much for your time -- it's very kind of you to offer the help!

Yes I would try gluten free. You have to do it for several months or a year though to really see a difference if there is going to be one.

The nerves could have been damaged some by your previous work. They don't always show that damage right away...there is a cushion of sorts, before they reach a point where things become symptomatic. Pile on other triggers over time, and they add up and bingo...

I'd avoid vaccines from now on, unless there is a compelling pandemic or the like. They tend to trigger autoimmune reactions in people with inherited tendencies for this.

Autonomic neuropathies are peripheral too...they are unmyelinated fibers, like some of the sensory ones.

You might try using acetyl carnitine up to 2 grams a day in divided doses to see if there is any change. Expect 3 months to show a change. This supplement enhances fatty acid metabolism instead of glucose in the mitochondria. Damaged mitochondria may respond to this.

I'd also cut out the carbs and sugars as much as possible. Also watch your triglyerides. When high these clog up the blood vessels and impair circulation to the periphery and the nerves suffer then. This fish oil lowers triglycerides BTW.

Using Omega-3 fish oils or Krill oil, may help with any inflammatory issues you have.
Look up the Zone diet....it is very good at controlling blood sugars and also helps reduce inflammation.

Magnesium lotion may be helpful for specific targets. When calcium and magnesium go out of balance, face tingling may occur. This lotion is really nice and provides the magnesium you need because some is absorbed. The rest blocks the NMDA pain receptors, improves blood flow and stops any cramping of muscles.
This is the affordable one many of us use with success:

http://www.amazon.com/Morton-Epsom-L...n+Epsom+lotion
This is also in most local WalMarts, and Walgreen's.
Apply to only intact skin, avoid eye areas, and don't slather it on. A little goes a long way. If you have many spots to put it on, rotate them daily with other areas. Too much may make you tired, sleepy etc. I use this every day and it has been fabulous for me and many others here at NT.

The suggestion to rotate areas of application has me concerned. I've found the lotion helpful in diminishing nerve pain which occurs in my calf, shin, and thigh muscles at the same time, but I often need to use it at night and again during the day, all over both legs. Is there a problem with using the mag lotion over large areas on a regular basis, other than the tiredness/sleepiness you mentioned (but hasn't been a problem for me)? Thanks in advance for the clarification.

Magnesium dilates blood vessels and can
Lower high blood pressures.

Those without hypertension may see reductions
Too . So you can take your blood pressure
to check on that.

Applying to large muscle areas may be
Less systemically absorbed than to areas
With visible veins. The wrists and inner arms
Give me more blood pressure lowering
Than the thighs and back.

Large deep tissue would hold the magnesium
More than other application sites.

People with normal kidney functions excrete
Magnesium quickly. The elderly or those
With failing kidneys do not.

Magnesium overdoses most commonly
come from overuse of Fleet enemas and
oral Fleet Phophosoda laxatives.

I find that application of the lotion to
Thighs and back areas lasts me a few days
So I can rotate applications easily.

You might consider using an oral supplement
Too as a support. Aim for 200mg of
elemental daily or eat foods high in
Magnesium like almonds.