The Rx of 300mg Neurontin at bedtime is probably just to acclimate your body to the med. & see if there are any side effects.
At that minimum dosage, I don't see how it can in any way
affect your symptoms or even touch the pain.
It may help you sleep better, though.
Until you are on a daily regimen of neurontin that keeps a minimum of 1800-2400mgs a day 24/7, in regular intervals of say,
400-600mgs 4xday - I would not expect to see any help.
I was on 4200mgs/day of Neurontin for over 6 yrs when I switched to Lyrica, and am now on 200mgs of Lyrica 3xday along with
a pain killer(Tramadol/Ultram).

[QUOTE=glenntaj;611053]--just one comment on your test list--ask if they're going to do quantitiative immunoglobulins with that immunofixation electrophoresis (SPEP). Often they're done together, but not always. (Given your monoclonal history, it may be important to see the amounts of immunoglobulins present as well as their characteristics.)

And kpRN--welcome, and I have similar questions, since "mixed axonal and demyelinating peripheral neuropathy" that is idiopathic is more a description of what's happening, diagnostically speaking, than a cause. You're losing myelin sheathing from your larger nerves and this is also resulting in secondary damage to the underlying nerve fibers, but apparently there's no idea what's causing this. Given that this began in your upper extremities, one wonders about autoimmune possibilites, or mechanical ones, such as some variation of Thoracic Outlet syndrome or a brachial plexopathy (did they do any imaging of your neck and shoulder areas
?).

Tell us what test results you have--if you haven't gotten copies of them from the docs, get them. (We're pretty good with them.) And also, if you want, the Liza Jane spreadsheets are really good for tracking results over time, and suggesting future testing to doctors--these were designed to be as comprehensive a testing protocol for neural symptoms as we could come up with:



Hi glenntaj: Hope this finds you having a "as good a day as possible." I appreciate you taking the time to respond and try to help me out. I have recently had a slew of tests, just now getting all of the bills.......yikes. I took the time to fill out the spreadsheet and was wondering if there is a way to attach the pages so that you can see what all of the test results showed? In answer to your question, I did have an MRI of the cervical area which showed "moderate disc narrowing at C5-C6 and C-6-C7 with posterior osteophyte formation at both, most pronounced at C5-C6." "No specific etiology for bilateral upper extremity parasthesias." Also had the thoracic spine done which was "negative." I also have thought about TOS, but as I am now experiencing issues with the legs and feet, have more or less given up on that. I just have so many questions.....do I exercise even though it hurts, do I need to make changes in my diet? Sometimes my skin is so hypersensitive that I can't stand to be touched. This is really hard for some people to understand because I don't "look sick." I have periods of remission for which I praise God, and then it comes back. I can see that the periods of remission are far shorter than the periods in which I am at my worst. I guess I need to find a specialist for PN because the neuro pretty much diagnosed it and booted me out the door. Tell me what you know and if you need more info, ask away. I am not trying to hide anything, I just don't know what all I need to share. Another weird symptom....when I exercise, the numbness & tingling is threefold. As I walk outside to my car, w/in a few minutes of being in the cold, it is much better. Is that typical?

Thanks dahlek. My life is an open book, if you need additional info....ask away. The impression on the EMG/NCS says: The above EMG/NCS reveal electrical evidence of a mixed axonal and demyelinating peripheral polyneuropathy. There was no electrical evidence of superimposed cervical / lumbosacral polyradiculopathy, myopathy or mononeuritis multiplex.

In reading through the lengthy report, it is mentioned several times that the "F" wave latency is absent. (R. ulnar,R. median, L. median, R.post-tibial, right peroneal and left peroneal) Also the right and left sural sensory terminal latency is absent.

The strange thing is that up until this test was completed, the diagnosis from the neuro was "mononeuritis multiplex."

My ACE level was elevated in the blood work and there was some concern about sarcoidosis. I was sent for a chest x-ray to rule that out and the result was a normal chest x-ray. My arsenic level was high initially, the repeat was within normal limits. Other heavy metals were normal. My ESR was slightly high at 23 with the normal range being 0-20. B12 was 521 and Folate was 13.9

Not sure what else is critical to share so that you can help with this puzzle. I am more than willing to roll my sleeves up and get my hands dirty in a search for answers. I appreciate any help I can get from my new friends and do believe that there is strength in numbers. I also believe that what doesn't kill me will make me stronger. Looking forward to hearing from you and anyone else with wisdom to share.

nide44: You are 100% correct. The neurontin has helped me to sleep, although the first night I got up to go to the bathroom and was EXTREMELY dizzy. After that, not so bad. Just trying to hold off on any additional meds until I can't stand it anymore, maybe that is the wrong approach?

From the other test results you just reported, you seem to be undergoing at least some degree of inflammatory process. That, combined with the idea that you're feeling symptoms beyond your arms, and that the cervical MRI did not show a definite spinal cord compression or foraminal narrowing/nerve root compression (lost of disc height and osteophytic--bone spur--formation in the spine is very common as we age) would probably indicate that some sort of cervical spine/nerve root problem is not a primary generator of the symptoms.

Your B12 level and folate level are a bit lower than most of us would be comfortable with, even if the range is "normal" (and a lot of us think the ranges, especailly for B12, are set too low in the US compared with Europe/Japan)--are you taking any kind of supplementation now?

I'm specifically wondering about that elevated ACE level--neurosarcoidosis, though rare, can present as granulomas of the nerve tissue even without presence in the respiratory tract:

http://neuromuscular.wustl.edu/antib...op.htm#sarcoid

Feel free to tell us all you are comfortable with (and you can use private messaging if there are things you don't want the "public" to see).

I think just a chest Xray is not enough. Sarcoidosis can occur anywhere in the body.

You also have to get a firm diagnosis...because Vit D is contraindicated with sarcoidosis. If you get a test run and you are high without using supplements, that would be indicative too.

I've always had an mildly elevated ESR, but it never panned out with further autoimmune testing. Some people just have this, in the mild form. ( I have osteoarthritis, and my doctor thinks this is what raises the ESR).

Since you have periods of remission, I'd explore a viral cause.
The Herpes viruses do this, activate and sleep. You can have blood work showing antibody titres... and if high, perhaps a trial of antiviral will help you. You CAN have shingles pain, without vesicles. This virus activates in the presence of arginine, so if you consume high arginine foods, without balancing with lysine, you can activate Herpes.
http://www.herpes.com/Nutrition.shtml

Try some lysine daily ...starting at about 2 grams, and see what happens for you. If you start feeling better within a week, that would point you to viral testing. The Herpes family of viruses are very sneaky...hard to identify when they activate sometimes.

I am going to try and upload my files from the spreadsheet so you can spot something that I should have included. Don't know if this will work but will try.

For some reason it is indicating an invalid file. Don't know if the file is too big or what. I have tried to send each page separately but again not sure why it won't allow. Any suggestions? As always, thanks a million and hope you are having as good of a day as possible. (Sorry....I had to remove your URL link in order to be able to reply but I have saved it and will check it out.)

Thank you for the valuable information contained here. I have tried to download my copy of the spreadsheet but for some reason, I am unable to do so. Says it is an invalid file. Any suggestions? I want to provide you with as much info as I can. Again, thanks. (I also think I have some component of arthritis. When we are expecting rain, I can tell before the weather man announces it!! Bone pain like none other!! ) Sorry, I had to delete your url in order to reply but I have copied it and will read on it shortly.

I think you have to have a spreadsheet program on your computer to download that site.
Hubby says OpenOffice.org has free.
He has it on his laptop. (he says it is a large program, takes a while to load).

I have never been able to get it either on this machine.

Shoot. That would have made things so much easier. It is a wonderful spreadsheet......contains so much valuable information. If you can think of anything else, test wise, let me know and I will forward the results.

Might try copy & paste into a word document since that is one of the allowed documents. Never hurts to try.