[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?