Discouragement with Dx Discrepency
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.