EMG - "MILD AXONAL NEUROPATHY"

You're definitely not alone! I've felt alone as of late but then remembered that Mayo has this supportive type of environment. I'm glad I clicked the link. I've got Axonal and Coronal Chronic Inflammatory Demyelinating Polyneuropathy or CIDP. Not fun!! Waiting for the next round of specialists. My body is reliable about 20% of the time, so it seems. Seropositive rheumatoid arthritis, Hypercontractile esophagus, PLMD, chronic Inflammatory sinus disease (going to see a new ENT specialist this afternoon in regards to that surgery coming up) , Fibromyalgia, Anterior Rectocele, Cystocyle, Perineocele, Spastic pelvic floor syndrome, Migraine, DDD all throughout my spine with some angry herniations, Intractable pain, and unfortunately many more comorbidities. You're not alone. I was just referred back to a GI specialist at Northwestern and am scheduled to see him in May...he added me to the wait list fortunately. I'm told that the only place that can accommodate my case for pelvic floor pt is within some outpatient pt center at Northwestern. Going to make those calls to get on the books. I've got more to share but my body is telling me it's time for a little rest before the new ent surgeon. Wish me luck!

I don't smoke, I don't chew, and I don't go with girls who do!

Hope Linda is aware of that, lol.

I have a family history of CMT (formally known as Hereditary Sensory Neuropathy). My four children and I went to Weill Cornell Hospital for a Whole Exome Test in 2018 that not only looks for gene mutations but they compared my results against my four children in hopes of finding common gene mutations that we all share. We also all underwent EMGs. Turns out I was diagnosed with chronic and severe Sensorimotor Axonal Polyneuropathy, CMT2 and CMT4B. My children were all positive for CMT so this neurological disorder is now in the 8th generation in our family. CMT comes down on the X chromosome so thanks to all the women on my mothers side of our family. It turns out I’m also a SMA and GAN carrier. Fortunately, my children did not inherit the SMA or GAN mutations so those gene mutations will die with me. My children do not have Sensorimotor Axonsonal PN so that's a blessing. I basically have no sensation below my hips do walking is difficult and my balance is awful. What can I say, life is challenging? I have a great support system. My wife and my three daughters are very supportive. My son - not so much. I also have CML which the Veterans Administration linked to Agent Orange and the contaminated water at Camp LeJeune, NC. The VA does provide Uber rides for me to go to all my medical appointments because I cannot drive due to the PN. I'm not on any drugs for the PN but I'm on a strict chemo regimen for Leukemia. I also have to have monthly labs and infusions at Sloan Cancer Center. Like I mentioned earlier - life is challenging. But as Dorie the fish said, “we swim because that's what we do.”