Question: What testing have you had for neuropathy?

Posted by bettyg81pain @bettyg81pain, Jul 8 9:14am

I just got a call from the nurse in my neurologist office that wants me to come in for a more extensive testing-first one they did just said that I did have severe neuropathy-next test showed that it was an auto-immune problem and they needed to do another test to see if they can correct the problem or if they needed to refer me to another type of doctor (forget what type she said)-have all of you gone through this same testing?
At least they are trying to find a solution rather than saying tough luck.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Ray Kemble | @ray666 | Jul 8 12:35pm

Hi, Betty (@bettyg81pain)

I'm guessing that your first test was an EMG. Am I guessing correctly? And your second test? Was that a follow-up EMG? I've had two EMGs myself, but a year apart, to determine if my PN had worsened. (It seems it hadn't.)

Ray (@ray666)

21msmonrow | @21msmonrow | Jul 8 1:58pm

Does Mayo in Mankato have a neurologist?

bettyg81pain | @bettyg81pain | Jul 8 2:08pm

In reply to @ray666 "Hi, Betty (@bettyg81pain) I'm guessing that your first test was an EMG. Am I guessing correctly?..." + (show)

Yes, the first test was an EMG - when results came back for it (was told right then that it was "severe" neuropathy - the next neurologist appt was for blood work and today someone called and said testing showed it was auto immune and they scheduled a new appointment for further testing to see if they can do something for it or refer me to another dr that should be able to help. What has been your experience? At least now instead of just prescribing alot of Rx's & Tramadol, they are really trying to be helpful. I'm sure like you, this has been going on for a long time and we just want to enjoy life again!!

Ray Kemble | @ray666 | Jul 8 5:53pm

Hi, Betty (@bettyg81pain)

I'm not sure I'd ever heard of peripheral neuropathy when, over two years ago, I first complained of worsening balance. My first meeting with a neurology-type clinician was with an NP, who had me first get a brain MRI (nothing suspicious was found there) and then a cervical MRI (some slight intrusion on my spinal cord, but nothing warranting surgery). It was shortly thereafter I got EMG #1 and an idiopathic polyneuropathy diagnosis. The diagnosis got me to reading, learning all I could about my disease. Meeting with the neurologist roughly a year after EMG #1, I requested a second EMG, on the surface, to see if my neuropathy had progressed, but also to tag my disease with something a bit more specific than "idiopathic polyneuropathy."
What I'd been reading had me suspect mine was large, or predominantly large, fiber (I had –– nor have –– pain; only a wonky balance). EMG #2 confirmed my suspicion: large fiber (with little or no progression –– thank goodness!). (Somewhere between EMGs, I had my DNA tested to rule out a possible genetic cause.) So, that's it: two EMGs plus a DNA test.

Ray (@ray666(

Colleen Young, Connect Director | @colleenyoung | Jul 8 7:59pm

@bettyg81pain, you might also be interested in these 2 related discussions:
- Testing for Neuropathy: https://connect.mayoclinic.org/discussion/testing-for-neuropathy/
- Diagnosed with Peripheral Neuropathy, or not??: https://connect.mayoclinic.org/discussion/diagnosed-with-peripheal-neuropathy-or-not/

I'll be interested to hear if they find that your neuropathy is related to an autoimmune disorder and, if yes, which one.

Colleen Young, Connect Director | @colleenyoung | Jul 8 8:01pm

In reply to @21msmonrow "Does Mayo in Mankato have a neurologist?" + (show)

@21msmonrow, yes, Mayo Clinic Health System in Mankato provides neurology care, including neuropathy. Learn more here: https://www.mayoclinichealthsystem.org/locations/mankato/services-and-treatments/neurology

NJ Ed | @njed | Jul 9 6:25am

@bettyg81pain Like Ray, I'm not sure I ever heard of the medical term peripheral neuropathy. After 1st test, doctor said looks like you have peripheral neuropathy. Two hours later, I'm online searching what I can about PN. That was 10 years ago and the search for information continues on even today. I had several neurologists do EMG testing, oh yea, you have PN. That I know. So, after a degree of frustration, I decided that I needed to get a variety of tests done, find out what's really going on. I wanted a neurologist very familiar with PN. I applied at Mayo in 2019. In 2020, flew to MN and they did lots of testing all in a few days. My symptoms were complex, and I had prior ENG test results along with other tests to show Mayo what testing I had prior to contacting them. Try to get as many tests done that you can. Your tests may provide answers. I always asked for copies of my fest results including any MRI's. In the future, should you wish to apply at a Mayo facility or perhaps a major teaching hospital, all the prior test results will be a real asset when making application. By the way, I found out that some tests were done to rule things out which helps neurologists to a diagnosis. Hope this helps, wish you the best. Ed

mjpm2406 | @mjpm2406 | Jul 9 8:20am

My daughters and I underwent EMGS, Needle EMGs and genetic testing (whole Exome Sequencing) at Weill Cornell Hospital because we have a family history of CMT. The diagnosis of the EMGs indicated I have Chronic and Severe Sensorimotor Axonal Polyneuropathy. My daughters tested negative for that disorder. The genetic tests indicated I have the gene mutations linked to CMT2 and CMT4B. My oldest daughter tested positive for CMT2. My youngest daughter tested positive for CMT2, and CMT4B. My oldest daughter started her symptoms at age 45. My youngest daughter has not yet experienced any symptoms but it’s only a matter of time.