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rachelpatrick22 (@rachelpatrick22)

How Long Until Diagnosis?

Autoimmune Diseases | Last Active: Mar 17, 2019 | Replies (9)

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@rachelpatrick22

Hi @johnbishop

I have a ton of symptoms really. I will try to list them, but I am not sure what is associated with each other or if things are separate. My Endocrinologist seems to think I have stress induced inflammation from an autoimmune disease.

-extreme fatigue/lethargy
-pain in joints
-pain in bones
-tingling in hands and feet
-migraines
-vision disturbance
-malaise
-dizziness
-sudden onset of prolonged QT arrhythmia and T wave abnormality on EKG
-ringing in ears
-petechiae
-phantom fevers
-high lymphocyte count
-prone to infection with antibiotics not working like they should

This has been flaring up every few months for the past 9 years. I have been to many doctors for individual things, but I just started clumping it all together to try to figure out the cause so I can get well. I’m so exhausted from trying to jump through hoops to even get tested for a single antibody. I don’t know which doctor would be the right doctor to see, what tests I need, or anything. I did a pituitary MRI and my frontal lobe showed edema. Several weeks later I did a brain MRI and it was normal.

I’m just tired of not feeling well. It’s affecting my career and everything

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Replies to "Hi @johnbishop I have a ton of symptoms really. I will try to list them, but..."

@rachelpatrick22, that is certainly a lot of symptoms. There is another active discussion that may be helpful for you to read through and meet others who may have some of the same symptoms.

Groups > Just Want to Talk > Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments
https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

There is a TED talk by Jennifer Brea who became progressively ill with myalgic encephalomyelitis. Have you seen it?
What happens when you have a disease doctors can’t diagnose
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

If you prioritized your symptoms which would you put at the top?

@rachelpatrick22 . Sounds like a lot of symptoms to deal with! Have you been to Mayo Clinic or a university medical center? When I got sick almost 2 years ago, it took 10 months for them to diagnose . All of my symptoms were gastrointestinal so they removed my gallbladder. I would go to the ER because I wa so weak and dehydrated. It was awful. I finally begged for an MRI of my head, and there was my problem. I had a rare autoimmune disease called Clippers ( first named in 2010). Doctors here knew nothing about it or really what to do so we went to University of Colorado Health Sciences Center. Long road, but I’m slowly getting better. University medical centers, Mayo, etc.have more up to date knowledge. I sure wish you luck!