PN Specialist/Centers near Kansas?

Posted by saraf805 @saraf805, Jan 23, 2019

Hello - Does anyone know of any PN specialists that they recommended near Kansas? Doubtful, but thought I would ask. I believe I have SFPN but have not been officially diagnosed. My PCP sent me to a neuro for an EMG but nothing came back other than carpel tunnel. He basically sent me away and told me it was all in my head. From what it appears, I have full body neuropathy. Numb & burning hands and feet, tingling, feeling like I have something crawling on my skin, soreness/pain in hands and feet, limbs fall asleep quickly, stabbing feeling all over including my scalp, eyelids & face, lightheaded when I stand up quickly, dry skin, dry mouth, occasional perceived weakness, etc. It came on very suddenly over a course of weeks. The only thing I can think caused it was a round of Cipro antibiotics or drinking excessive wine in my 20's - I am 36 now. I was tested for diabetes (came back normal), vitamin B & D, MS, Sjogren's syndrome, thyroid, and so on. I was not tested for heavy metals. I just want to cover all bases when it comes to determining the causes before I call it idiopathic, and would like a definitive diagnoses from someone who specializes in neuropathy. It is not all in my head.

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

John, Volunteer Mentor | @johnbishop | Jan 23, 2019

Hello @saraf805, welcome to Mayo Clinic Connect. I don't know any neuropathy specialists near Kansas but if it's an option for you, Mayo Clinic Rochester would be an excellent choice to get a diagnosis and come up with a treatment plan. Rochester, MN is not too far from Kansas and I definitely think it would be worth your while if it's an option for you. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.

saraf805 | @saraf805 | Jan 25, 2019

In reply to @johnbishop "Hello @saraf805, welcome to Mayo Clinic Connect. I don't know any neuropathy specialists near Kansas but..." + (show)

Thank you, John! I have requested a call back from the Rochester center.

John, Volunteer Mentor | @johnbishop | Jan 25, 2019

@saraf805, can you keep us updated on your progress? Hoping you get some help soon.

saraf805 | @saraf805 | Jan 25, 2019

In reply to @johnbishop "@saraf805, can you keep us updated on your progress? Hoping you get some help soon." + (show)

Will do! While I wait for be seen, do you happen to know if neuropathy can make your toes and fingers physically red? I’ve been unable to find anyone with the same.