How Long Until Diagnosis?

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?

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

@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?

Thank you! Well to be honest I do not even think it’s that difficult. I just need my doctors to do the tests for antibodies. I have been to 2 Rheumatologists and both refused to see me, stating they do not treat those symptoms. 2 neurologists as well. I’m beside myself because those are the specific kinds of doctors that is supposed to handle these things.

As of now, I have only had a TPO and ANA screen, and the TPO was because I practically begged my Endocrinologist to test antibodies. My neurologist wants to look at me and diagnose me with fibromyalgia without ruling out other possible autoimmune diseases with tests. And I don’t like the fibromyalgia diagnosis. I hurt, I’m lethargic, and symptoms vary by intensity depending on the day. This is not just in my head and I’m not willing to accept a lazy diagnosis without ruling out other possibilities. I just don’t understand why it is so hard for a doctor to check a box on a test order form to test for antibodies.

I went to the 3 Rheumatologist’s office today and broke down in tears begging them to see me and gave them all my medical records showing the abnormalities. Said I just need tests for antibodies. They will call later this week to let me know. I don’t know why it has to be so hard.

@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!

@becsbuddy Thank you for sharing your story. Because I have some of the same symptoms as you did. Gastrointestinal issues etc. My gallbladder was removed some years back and things slowly got better but now wham. This thing has come back with avengence and I’m afraid the doctors may not be able to help me. I’m in the process getting more testing done. A CT of head is one of them. I’m praying that they find out what this is soon. I’m getting sicker as the days go by.

I live in Houston and we do not have a Mayo Clinic here. But I was looking at old tests from years ago and I had an ANA positive screen, then high lupus anticoagulant factor, and complement component C3C was low. But then my next Tests after that were normal for some reason. I haven’t been tested since, but I’m wondering if that is something I should do. I have a lot of random abnormalities in my labs that do not directly point to a single thing, so it’s really tough.

@rachelpatrick22

Have you been tested for Antiphospholipid Syndrome aka APS aka Lupus Anticoagulant?

I am seronegative for RA, I have had for the last 3 years developed ulcers on my feet, ankles, and shins. I went to the local wound center and first ones healed. 6 months later they reappeared. I had a huge one on my right shin, ended up on IV antibiotics for 3 weeks. The skin on my feet and ankles got leather like and stiff, then the skin started to peel off of my feet and ankles. I take leufludime and hydroxycloriquine for my RA. I had the antibody test it was there, my rheumatologist sent me to a hematologist, he said there was not enough to do treatment. I had my first infusion of Rituxin on December 21, small breakout on my hands. Second infusion on January 5. Meanwhile my wound care Dr referred me to Mayo, My first appointment was with Dermatology. She suspected immediately what I had. Set up appointments with Rheumatology and Hematology. Rheumatology said my Rheumatologist was doing everything right. Hematology did tests and came up with ntiphospholipid syndrome.
Put me on lovenox shots for 6 weeks and transitioned to eliquis now. Still have pain in my feet,