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Having Difficulty Getting Diagnosis
Chronic Pain | Last Active: Jul 11 7:04am | Replies (67)Comment receiving replies
I have a neurological disorder that took over two years to diagnosis. I was everywhere. I even drove to John Hopkins which didn’t amount to anything as the doctor was disinterested. I had every blood possible. I was at a Lyme Disease specialist which was $550 out of pocket. I went to a medical doctor who was extremely hard to get into and took no insurance. It was $750 just for the consultation. They took 14 vials of blood which amounted to nothing. I was taken for a lot of money there. The only good thing was that my primary doctor believe there was something wrong as never gave up. I was finally diagnosed with small fiber neuropathy by some arrogant neurologist who was only ordering the skin biopsy because I had bladder issues. He said “I hope it comes back positive so people don’t think you’re crazy”. I put up with a lot if garbage in my two year quest to find a diagnosis. I suggest you never stop searching for answers. You know your body better than anyone. It may take some time but you will eventually find your answers. One last thing did your GI order a Smart Pill test read up on it, it’s worth a try.
Replies to "I have a neurological disorder that took over two years to diagnosis. I was everywhere. I..."
My Granddaughter was diagnosed with CRPS after 5 DRs. One Orthopedic group suggesting they break her legs because her Femurs were a little crooked. A Physical Therapist put cast like supports on her ankles starting this mad pain taking her down a rabbit hole that no one has an answer for the intense pain of Complex Regional Pain Syndrome. The parents might end up taking her to Italy for treatment to relieve her pain. No one will give her pain pills. This has been a night mare.
Hi @dianecostella, Thank you for replying to my post. I am sorry to hear that it took you two years to get diagnosed with what you are dealing with. I hope everything is well with that. I am definitely not giving up and will search to the end of the earth for an answer as to why my body is not acting as it used to. I had not heard about the smart pill test until reading your post and am definitely going to be looking into it. I had been wondering if my stomach was not emptying at a normal rate as it feels like at times it takes a lot longer for my stomach to clear and the indigestion to stop. I appreciate your reply. Thank you!
I am having this same issues. I can’t get any answers. What doctor did you go to for answers. This is my second primary doctor and no answers. I was finally got a referral to a neurologist but the appointment is 7 months away. I am in the Duke system which is in Durham NC. I am still struggling.
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Hi @dianecostella, Thanks for sharing the suggestion on the Smart Pill test. For those that have not heard about it here is some information that explains how it works.
How Smart Pills Identify Gastroparesis - Cleveland Clinic: https://health.clevelandclinic.org/how-does-a-smart-pill-help-diagnose-your-gastroparesis/