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?