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rachelpatrick22 (@rachelpatrick22)

How Long Until Diagnosis?

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

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@johnbishop

Hello @rachelpatrick22, welcome to Connect. I'm sure it's different for each of us. I didn't think the testing was that hard for me. The thing I learned was it's not helping you to wait before trying to get a diagnosis.

I had idiopathic small fiber peripheral neuropathy for 20+ years before I got a diagnosis mainly because the first doctor I complained to about numb toes/feet told me it was probably nerve damage and they can do some tests to find out. I asked if it's nerve damage what can you do and when he said nothing I let it go and just lived with the symptoms until a couple of years ago. Then before I could meet with a neurologist he ordered some tests for me – EMG, MRI and some blood work. That was pretty easy but took a little while to get it all done.

I also have polymyalgia rheumatica (PMR) which is currently in remission. The first occurrence I lived with the pain for about 3 months before getting it diagnosed and treated. I met with a rheumatologist and had a SED rate test before his exam. He gave me a diagnosis and sent me on my way with a prescription for 20 mg prednisone. It took 3+ years to taper off of the prednisone and the PMR went into remission for 6 years. The second time the pain came back and I knew right away it was PMR and the doctor ran the SED rate test to confirm and it was back on prednisone for a year and a half before the PMR went into remission again.

What symptoms do you have?

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Replies to "Hello @rachelpatrick22, welcome to Connect. I'm sure it's different for each of us. I didn't think..."

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