I should have posted this a week ago. Anyway since my first diagnosis of neuropathy in 2009 with the many tests showing nothing, it comes down to a yearly visit to the neurologist. They switched my appointment twice so I'm almost 6 months late but I didn't care because it seems worthless anyway. This time I will tell him I'm much the same but that I do get bouts of numbness in many places including my hands, arms, face and lips at times. I seem to have leg spasms under control but the numb feet are still the main issue. My question to you all is, should I take this opportunity to ask for any other tests. do i play it all down and tell him I'm still active, hiking, biking, kayaking etc. Or do I tell him I think it's slowly spreading and I want some answers. I see him at 1:00pm today, Thursday.

I am still not on any neuropathy drugs just occasional Tylonal and Tramadol. I am on warafin due to a pulmomary embolism last year.

I take
lipoic acid
vit D
Vit B12
hyalouronic acid
Sam E
Ionic Fizz
Milk Thisle
Starting vit C
Krill Oil

My INR has remained pretty stable even with some of these contradicting things. I also eat lots of veggies.

Did you have tests for MGUS?

If not, I'd get that specifically. Esp the Cryoglobulins, since your first serious episode was from cold exposure. The cryoglobulins thicken up and block circulation when exposed to cold temps.

I don't remember but i will bring it up thanks.

Well I got in right at 1:00 and met with a physicians assistant. I was there over an hour. I brought up the MGUS Cryoglobulins test and she told me I have had it and that I had gotten the million dollar testing. Meaning they tested everything. I told her my symptoms were worse but slightly and that my whole body was effected at times. We did discuss the IBG infusion therapy because I brought it up. Later the doctor came in and said that was for people with increased severe symptoms and he was not sure my situation was that progressive. The fact that I have a lot of strength, am coordinated and look pretty in shape for 59 seemed to make him want to steer me toward Lyrica or Gambian etc.

I suggested another nerve conduction test to compare from 2009. Wonder why he didn't suggest it. Well he thought that was an acceptable idea so come April when he has the time we will proceed.

It did seem to make sense not to take a chance with such an invasive treatment that has to be done in a hospital and is so expensive at this point.

So it was a nice long visit and it was nice to have the PA so interested in my case. Any thoughts. Thanks.

Sorry you are having such a hard time. Is there any other test that you can have besides nerve conduction tests? It seems to me that if you are willing to under go such a test, he should take you a bit more serious as to the condtion you are living with. I would look up all options before be subjected to this particular test. I would also ask another doctor his opinion before I submitted to it. I am a scared patient, and I avoid all really icky tests if I can help it. I exhaust all other options before I go through something so unpleasant. Just a thought, ginnie

My first one was done in the neurologist's office. I spoze the kinds of equipment & testing they do in-house depends on the focus of the practice(?)

Doc

Have you just seen 1 neuro? Maybe see another one for a different opinion or approach? On the NC front my 1st one did not show but my 2nd about 6 months later did show PN. I had the NC/SSEP/EMG. The SSEP I guess shows more. Have you had any mri's of the brain and spine? Have you seen any other type doctors?
Is there a reason you don't want to try meds like Lyrica?

--to check for MGUS, and rogue monoclonal antibodies in general, the gold standard test is an immunofixation electrophoresis of serum and urine (in the latter case along with a survey for Bence Jones proteins), not a protein electrophoresis; the latter is cheaper, so many docs order it, but small elevations in immunoglobulins can be obscured in the gamma ban when only a protein electrophoresis is done.

You should request and keep copies of all test results.

If I recall I I was sent to 3 different types of doctors including a neurologist before I requested seeing my current one who is considered one of the best around here. A friend of mine worked for him so I think I got in, and I believe very complete testing. All that was found was the protein that got me to the hematologist in search of cancer yuk! I have a nuero, a cardiologist, a hemtologist, a dermatologist, now a pulmonologist. Saw a rumotologist who said all tests were negative. I have a chiropractor, kinesiologist and a massage therapist. And my GP. Sorry if I left anyone out. I fired my thyroid doctor. GP monitors that. I have been scanned from head to toe. Bone marrow biopsy, lung biopsy. Something in my lung has grown to 12 mm. negative for cancer, but they are curious. A year and a half ago a swing collapsed (7 ft galvanized pipe on my head) Had brain scans. Everything okay. I have had more blood drawn than a vampire victim. Doctor visits have become a second career. Working full time it gets weary. My goal this year is to minimize those visits.
I have told every medical person my saga over and over again, waiting for one smart doctor to put it all together. The hemo said,"Obviously you have some kind of autoimmune disorder and now it's attacking your lungs". I'm beginning to think some force is trying to kill me and they keep failing LOL! So interesting that I have had so many issues and tests always negative. That being said I feel pretty good and expect to go hiking or something this weekend. Can't wait for the warm weather. everything is so much better then. Keep fighting!