Neuropathy Questions...
 

Hi everyone....sorry, this is a long read, just trying to be complete.

I'm DB, (this is a nickname my late dad gave to me). I've been diagnosed with Neuropathy in April of 2000. It's steadily gotten worse. I fought it off till I just couldn't take the pain of staying on my feet, in 2008. I am now on disability.

I've been to 6 different Neurologists, both local and in Nashville. I now have a very good (local Neurologist who I see every 6 months, just in case of anything new comes out for me to try. I've asked him to keep me on a first call list, for any new medications that may help with neuropathy pain.

Over the years of suffering from this, I have been on so many different medications, and combinations, I just can't remember what they were, but the end result was that nothing that was prescribed, helped. Not even a little bit.

Also The extent on my neuropathy is, both feet, both legs, and as of the last 2 years, both hands.
I've had multiple Nerve Velocity tests, and it has been confirmed every time.

Testing:
I've had (as far as I know, and have been told), every test there is, for finding the root cause.
The bottom line is, I'm healthy as a horse.
I'm not diabetic, I have no vitamin deficiencies, or vitamin absorption problems, I have no spinal problems, I've been to 2 different Podiatrists, and have nothing out of the ordinary wrong with my feet. I've had multiple cat scans, showing nothing. My heart is in great shape. I have great numbers concerning cholesterol & triglycerides.

In the end, all who have examined me, have not found any cause for my condition.
With one exception. For the last 20 years of my Dad's life, he also had Neuropathy, and he was the same. Never found the root cause.

So because of this, they have all said that it's my inherited genetics.

For the last 5 years, I have been taking Lortab 10's (3 a day, when needed).
This is the only medication that has actually given me relief from 24/7 pain. The pain I'm in is a 7 to 8 (on the 0-10 pain scale). These pain killer meds have brought that down to a manageable amount of pain, (approximately 4 to 5, with spikes of about 7).

My worst problem right now is a complete lack of energy, and poor sleep. But I'm assuming the poor sleep issue is due to my lack of activity??? Not sure about that though.

My mood is Ok, I'm not feeling depressed, or lack of focus.
I simply feel drained, all of the time.

I have read that this is a side effect of being on pain killers, for an extended period of time.

Do you agree with this???
Is there something I can do, some kind of supplement I can take, to give me back some of my energy?

I have a full blood workup coming in 3 months, and will post the results in this thread, when I get them.

For a little more info about myself:
I am male, 6'2", 245lbs, 50 years old
My latest doctor, who is the one thats been requesting all of these test, says I'm very healthy. All of my organs are 100%, I don't drink, don't smoke. I have worked in construction for my whole life, and have worked with many different chemicals, for various tasks, (which I did learn may be nerve damaging chemicals).

If you have any questions at all, please ask!
So as of now, my maid question is my lack of energy!
Any thoughts, or suggestions would be greatly appreciated!

Thanks for reading!
DB

It is certainly worth pursuing--
 

--the chemical toxicity and hereditary possibilities.

You did say you've had about "every test there is". Not to doubt you, but I bet there are some tests out there you haven't had. It is very rare that anyone gets a very complete work-up specific to neuropathy, especially when the more common culprits--spinal problems, central nervous system diseases, glucose dysregulation, obvious infections--have been ruled out. That is due to most neurologists not being specialists in neuropathy specifically, and not knowing about some of the more advanced testing that is available at specialty centers--particularly hereditary tests and those for specific autoantibodies to peripheral nerve.

As I often do with new posters here, I urge you to look at the Liza Jane spreadsheets:

www.lizajane.org


These were designed to be about as comprehensive a list of tests for neurological symptoms as the many minds here could think of, based on extensive research. You can check to see what you have and haven't had, and the spreadsheets are also good for tracking test results over time, to look for patterns.

There are some tests that can reveal hereditary causes of neuropathy--with the Human Genome work ongoing, this is a rapidly changing/advancing field. The most comprehesive updated list I know of is that of the Washington University/St. Louis neuromuscular database (a good resource for everybody to know):

http://neuromuscular.wustl.edu/time/hmsn.html

http://neuromuscular.wustl.edu/synmot.html

http://neuromuscular.wustl.edu/time/hsn.htm

From what you've written, your symptoms are mostly painful, mostly sensory--do the nerve conduction studies show motor difficulties as well?--and the slow upward progression coincides with nerve "die-back", which is a common presentation (nerves farthest from the body center are affected first, and later those somewhat closer).

Can you share any of the nerve conduction tests results?

chronic pain itself is a major drain on energy. some people report a boost in energy from taking B complex or b12 itself. i never got that energy boost from them. just living with PN wears you out add medicine and doctors appointments and struggling to accomplish tasks that formerly were easy and its not too hard to understand why we are drained.

Welcome to NeuroTalk:

If you start taking vitamins now, your testing will not reflect your status since the vitamins will show up as high.

It would be good to have B12, and D tested. Perhaps B1, and B6. If you have these measured, please bring the results here, as some doctors do not interpret the results accurately or usefully.

HbA1C to show average blood sugar levels.
Testing for immune globulins like IgM and IgG, IgA.
Testing for thyroid.
Fasting INSULIN to see if you have insulin resistance which is impaired glucose utilization (not yet diabetes).

Testing for Gluten intolerance. This dietary problem shows up in long standing neuropathies that are hard to figure out.
Testing information here: If you decide to test for this, you need to be eating gluten, so stopping it now is not advised.
http://neurotalk.psychcentral.com/thread1872.html

DNA test for MTHFR which is a genetic error, passed on that prevents normal methylation of folic acid and B12. If you cannot methylate these vitamins your nervous system starves in the mist of plenty (and the unmethylated ones will show up in testing as "normal"). Methylated B12 and folate are available OTC now without prescription.

Poor sleep may suggest that you are low in B12 for some reason,
a methylation error, or poor intake. MethylB12 is active in the brain and is the cofactor for making melatonin, our sleep hormone. If one is low in B12 then melatonin is not made and you do not sleep normally anymore.

There are special DNA tests for Charcot Marie Tooth genetic neuropathies. Here is a thread for that explaining:
http://neurotalk.psychcentral.com/thread121564.html
This is done at a special place, and is quite expensive. So keep that in mind.

Neuropathies that follow in families, may reflect Charcot Marie Tooth which makes them a primary factor.
Other neuropathies that are secondary to other disorders, may also follow in family lines, such as diabetes, autoimmune disorders (thyroid, lupus and others), and pernicious anemia.

There are OTC drugs and RX drugs that can cause PN. OTC ones are common-- acid blocking drugs, impair B12 absorption.
Antibiotics like Cipro and Levaquin are fluroquinolones, and Flagyl, damage nerves, sometimes for life. Using one of these drugs anytime in the past could damage you, and you would not even consider it, because doctors don't understand this fact or overlook it and won't admit to it.

Hi, and thank you for all of your suggestions and attention to this.

All of the above tests have been done both within the last 6 months, and within the last 2 years, and also by 2 different Internist MD's.
There were no issues, and all was normal.
The only direct link they could find, was that my Father had the same "unknown" neuropathy, for the last 20 years of his life. He spent over 10 years trying to find and treat his affliction, with no good results.

I don't have insurance that is as good as what he had, and I have no where near the money that my Father did. So with what I have, I do feel that I've done the best I can. I'm still learning to deal with it though.

For some reason, health wise, I've gotten most everything that my Father had, in his later years of life.

Another thing I can tell you is I've had test after test, regarding my vitamin levels, and they have always come back normal as well.
Even my podiatrist had those tested, and was one of the first things he wanted to know. After him came the Orthopedic Specialist, to give my spine a complete exam.
That one put me in the poor house. The results showed nothing, so then it was back to the Neurologist.

I've been taking Centrum Multivitamins since my mid 20's, and still to this day,

Thank you echoes long ago!
This is what I suspected. So this being known, I'd just like to be able to increase my energy level!

I just don't want to go and start popping herbal supplements, without knowing what I'm doing.

Thanks again everyone, for your time, and advice!
DB

Normal means nothing or very little when vitamins are tested at
MD labs.

If that satisfies you, so be it. But you could still be very low
in B12 and not even know it.

The new lab ranges do not exist in US. But some medical CE sites now recommend the newest low normal at 400 US units.
If you test at 220...for example, you would be severely low in B12. Your doctor would call your test "normal" because the lab does not "flag" it for him to consider. Many doctors do not even know the new guidelines.

Here is the American Association of Family Physicians article from 2003 on this subject:
http://www.aafp.org/afp/2003/0301/p979.html

One of the tasks of this forum is to point out to patients, that just because they had a "test" and the doctor said "normal" that just might not be accurate anymore!

vitamins/supplements
 

I have been dealing with spine issues/surgery; and a couple of surgeries not related to the spine. Unfortunately, after one of these surgeries was given a 14 day antiobiotic of Levaquin. This was after having bladder surgery. Everything was much worse after this surgery. At the time, was not aware of the possible nerve damage using levaquin. I do have painful PN; especially legs, burning ankles and feet. I take Oxycontin, as well as Percocet for breakthru pain. These meds do not seem to decrease my energy levely very much.

About 6 months ago, started taking Methylcobalamin B12 (2mg's) (on empty stomach) as well as 100mg's Stabilized R-Lipoic (empty stomach) and 150 mg's Benfotiamine 3 x's a day. These have been known, in some cases, to help damaged nerves. Mrs. D is quite knowledgeable in this area and has been of much help in guiding me with these vitamins/supplements. I must say, since starting these three vitamins, my energy levels have increased. Whether this is the reason; but also the pain seems to have lessened as well.

Hope this may be of some help.

(Gerry)