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Member Neuropathy Journey Stories: What's Yours?

Neuropathy | Last Active: Nov 23 5:30pm | Replies (573)

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@webdx2

At the advice of my girlfriend, I’m taking a first step and at minimal, ‘connecting’ with Mayo and all of you (she actually wants me to get away from all of my current doctors and go to Mayo).

My journey began 1 1/2 years ago when I was diagnosed with SFN and plantar fasciitis (in both feet at the same time). Earlier this year, after having Covid/pneumonia, the SFN progressed and started giving me issues once again. This was after spending months during the initial diagnosis to find a medication plan that worked for me. My primary physician started making some changes in medication which seemed to be working and then about 6 weeks ago I started dropping things, getting headaches and experiencing dizziness and severe head rushes and ringing in my ears, along with decreased vision. I ended up going back to my neurologist and they indicated I was having migraines so they put me on a medication for that, and ordered a MRI, along with a balance and auditory testing. I failed most of the balance tests, which I start therapy for next week, and I have mild hearing loss (I’m 51), along with my ears not being equal/balanced for vertigo testing (whatever that means). I have not received results from the MRI back but an odd thing is that I have severe pain to the touch underneath the base of the back of my skull. Not sure if that means anything at all, it’s just weird and very painful.

So as with many, one just never knows where the journey will take you or if you will ever truly find all of the answers or ‘fixes’ you are looking for. For me, and my girlfriend, maybe Mayo is a next best step to helping figure some of this out if the local doctors can’t. My quality of life certainly has diminished over the past 1 1/2 years, but as I continue to tell family and friends, it could be worse.

Thanks for reading everyone!

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Replies to "At the advice of my girlfriend, I’m taking a first step and at minimal, ‘connecting’ with..."

Hello KT @webdx2, Welcome to Connect and thank you for sharing your neuropathy journey. Knowledge is power and the more you learn about your condition, the better questions you can ask your doctors and hopefully find something that helps with your symptoms. You are off to a great start and hats off to your girlfriend for getting you to take the first step. Based on you mentioning severe pain to the touch underneath the back of your skull you may want to view the following discussion to see if it matches some of your symptoms.

Occipital Neuralgia: https://connect.mayoclinic.org/discussion/occipital-neuralgia/

More information that may be helpful:
-- Occipital Neuralgia: https://www.aans.org/en/Patients/Neurosurgical-Conditions-and-Treatments/Occipital-Neuralgia
-- What is this pain in the back of my head?: https://www.medicalnewstoday.com/articles/321017#occipital-neuralgia

If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Do mind sharing which of your symptoms bothers you the most?