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jen12 (@jen12)

Desperately Trying to Get Diagnosed

Autoimmune Diseases | Last Active: Dec 1, 2020 | Replies (75)

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Hi Colleen – Thanks for your reply as well. I understand they relieve more requests than available. I just thought someone suffering for 18 years who has seen dozens of doctors & specialists and still doesn't even have a diagnosis would be someone they'd be willing to take in. I'm not really receiving any care anymore; all of my local doctors are out of ideas – I've moved a lot over the years and this is always what happens, I exhaust all the local options until it just seems hopeless. I've tried to FL campus as I live near them, but they haven't been able to help, which is my my primary care suggested trying to go to Rochester. I need a multi-disciplinary team to help me figure this out and the Jax campus just sends me specialists who seem to work in silos. It feels like an infection, throughout the pelvic area, symptoms are urological, GI, skin irritation, and a recent biopsy revealed localized scleroderma (morphea) in the skin above the affected area. Any advice you can offer would be greatly appreciated.

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Replies to "Hi Colleen - Thanks for your reply as well. I understand they relieve more requests than..."

I’m curious how you know you have an auto-immune problem. Do you have any diagnosis for GI, urinary tract or auto-immune problem?

Hi, I have been off the network for about a month. Got a new computer and It's been hard getting up to speed with it!
I found Mayo Conect about 9 months ago. It was my saviour!
Many of my symptoms were the same as yours and many others. I have found that the majority of doctors have no idea what is making us sick.
My final diagnosis is somewhere between Fibromyalgia and Chronic Lyme disease! After reading everything I could over the last year, I feel all my symptoms point to Lyme. There are many sites that go into detail about it!
My point to all of this keep reading and put everything together in your mind!
I went through every dept. in my hospital system, with little luck, although putting bits and pieces together I came up with a plan, along with a very understaning primary care doctor.
Other than all the symptoms that come with this, my biggest symptom was HEADACHES 25/7. We finally worked out a program using Oxycodone twice a day. Have been on it for four months and doing better.
The other point you bring up is the overextending yourself. THIS HAS TO BE THE BIGGEST CAUSE OF SYMPTOMS COMING BACK!
I was feeling great until a month ago. Because of business i had to make three one day trips of 500 miles round trip.
I know better. Finally hit me a week ago. Slept for 15 hours a day for three days in a row. I'm working on getting my strength back. Two other things I can recomend that helped me. 1. A CBD oil Body message. 2. I go to Sliver Sneakers Yoga. It has helped me with my ballance and joint strength.
My feelings and Blessings go out to you!
It is not fair that we have to go through this.

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