Discouragement with Dx Discrepency

Posted by jeanniem @jeanniem, Apr 21 11:45am

Last year was difficult. Nerve and muscle pain increased significantly from January through June, ending me up with a rx of Gabapentin to control the never ending muscle spasms and a referral to Mayo Clinic. They ran a million tests and dx with a "slow moving peripheral neuropathy", probably a combination of genetics and Type 2 Diabetes. It was frustrating because the neurologist told me that this dx did not account for the difference in severity (greater on Left), nor the temperature difference and color changes (cold and purplish blue on the Left). He sent me home with recommendations to do a vascular work-up and find a new foot and ankle guy.

I followed instructions. The podiatrist (and later my physical therapist) specified that dx to Charcot Marie Tooth with some possible CRSP symptoms. (Neurologists have also gone back and forth on my mom having CMT. She is not diabetic so they go between idiopathic and CMT. She and I also both have MGUS. The jury is out as to whether those things could be related.) The podiatrist talked about my high arches and the way I walk – said my DNA has been working on those muscles and bone structure since I was in the womb. He has me in over the counter ankle braces to help with stability. I sent the update to my Mayo neurologist. His nurse emailed back saying he saw no evidence during my visit of CMT or CRSP.

I guess I don't really have a question. I am just voicing my frustration. Mayo is supposed to be the end all in medical stuff, right? What happens when your local practitioners' dx is different? I mean, the nurse didn't elaborate. She didn't say, "this test would have been different if you had CMT." I know it shouldn't matter. It just felt good to finally have a name to go with my experience. Getting that message felt invalidating.

@jeanniem, I am sure you are not alone feeling what you are feeling about a diagnosis discrepancy. I've only had numbness with my neuropathy but I went over 20 years before deciding to pursue a diagnosis because when I discussed the numbness in my toes when it all started my doctor told me it was probably nerve damage. I said can how can you tell and the doctor said we can run some tests to make a determination. My next logical question was if it turns out to be nerve damage what can you do? He said nothing so I said why have the tests and left a little disappointed and got on with my life. Fast forward to 2016 and the numbness getting close to my knees and I wanted to know for sure what my options were. Got a referral to a neurologist from my Mayo primary care and when all the testing and physical exam was done the diagnosis was idiopathic small fiber peripheral neuropathy. So what's the treatment – nada, nothing will help with the numbness. Which got me to trying to learn as much as I can about my condition and how I can best move forward. I found Connect which got me to realize I'm not alone. After reading the book The Wahls Protocol by Dr. Terry Wahls I started looking more at what I put into my body and any changes I can make to help improve my quality of life. I still have neuropathy but I feel that I have reversed or possibly stopped the progression which my neurologist told me was going to happen. I'm not sure if you have seen this discussion but it might be helpful to read what other members have shared including myself.

Member Neuropathy Journey Stories: What's Yours? – https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

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