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Illusive Diagnosis, Pain Increasing

Bones, Joints & Muscles | Last Active: Sep 3, 2023 | Replies (39)

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@jeanniem

Thank you, Erika. I have received some unhelpful feedback. My first neurologist did an EMG. There were abnormalities on both sides but she chalked it up to a technical issue and said everything was fine. She also told me my MRIs were fine and there was nothing more she could do for me. I went through 2 podiatrists and 2 general practitioners who told me I just needed to wear inserts and take ibuprofen. I had a GP ask me, "Would it really be that bad if this is somatic in nature?" After 3 years and numerous doctor visits, I found a podiatrist who really listened to me. He did an MRI of my foot and said something was going on. He got me into PT and, after being blown off by the 1st neurologist, pushed me to keep looking. I saw a spine doc who affirmed I have severe foraminal stenosis at the L5/S1. He originally acted like he would follow up with me but after reading the EMG said my issues are not connected to my back. His nurse went so far as to tell me not to contact them again unless I was actually having trouble with my back. I was so embarrassed! My super-hero podiatrist referred me on to Rheum and then to Pain Management. The rheumatologist was compassionate but said, since my blood tests were normal, there was nothing he could do for me. The pain doc did an injection and suggested I go to Mayo. At Mayo, they did another (3 hour) EMG and a nerve biopsy to show large and small fiber neuropathy. (I kind of wanted to shove those results in the face of that 1st neurologist who told me I was fine!) But even my experience at Mayo was mixed. The neurologist affirmed something was going on. The spine doc that brought me into the clinic blew me off saying I don't need further workup and I probably just need a brace or something. I have a new local neurologist who is kind and has not made me feel crazy. He sent me to a foot and ankle surgeon and I am working with the 2 of them to try and find the missing pieces. Of those docs who have proved helpful, every one of them have suggested there is a muscular skeletal problem making things worse. We just don't know what it is.

On a side note, I did see my GP today for the pain I am having around my shoulders. It looks like an old fashioned pinched nerve in the neck. Something common and ordinary, most likely. Nice to know!

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Replies to "Thank you, Erika. I have received some unhelpful feedback. My first neurologist did an EMG. There..."

Hello Jeanniem, I am so sorry to hear what you have been going through! For your pain, journey to get diagnosed and relief, and how inappropriately you have been treated. I think you should let the docs who need to be shown, the error of their ways. Let them know the results of your diagnostics that identify what's wrong with you. And, that you were treated inappropriately and didn't deserve that. Hard to do but a good way to pay it forward on behalf of future patients and hopefully humble those who need to be.

Unfortunately your story is common. Good for you to keep being your own advocate and being so participatory as you team with those who hold the quality of your life in their hands.

I wish you all the possible best in every way.
Warmest wishes, Sunnyflower