← Return to Autoimmune? Undiagnosed and don’t know where to go next

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@choover22

It all started with dizziness about 10 years ago. I went to a Neurologist first to make sure I didn't have a brain tumor or aneurysm. They did not see anything wrong with my blood vessels and no tumors. So they then sent me to the hospital to get a vertigo test. They ruled out that it was an inner ear thing. It was such a chronic issue it was hard to work. So they sent me to a dizziness clinic. They did a bunch of testing of my eyes, my ears, my heart, balance, etc., and said it was from a migraine disorder (which I didn't have headaches very often but had dizziness everyday). They put me on Amytriptoline and told me that these symptoms should go away within a year. It has now been 10 years and I am still dealing with dizziness. Anytime I try to go off the medicine I realize how bad my dizziness really was.

After that I had an emergency appendectomy. When they did the CAT scan they noticed a lesion on my liver. We have been keeping an eye on it but it hasn't seemed to get worse.

Then I started having trouble with my digestive track. It was like my digestive track would stop working from time to time. I would go weeks without an BM and have been in a lot of pain. They did a colonoscopy and other blood test and in the end determined it was IBS. I changed my diet but I still have constant issues with my digestive track.

Suddenly I have issues with a boat load of allergies, even though I have never had trouble int he past. They issues come and go and seem to change over the years.

I then started having leg pain. My legs and heals ache all of the time. My legs feel so weak and it is hard for me to stand or walk for long periods of time. My foot would get really hot and would burn and then go numb from time to time. I have been doing physical therapy on my legs and my physical therapist is surprised how much pain I am in when he barely pushes on my legs.

I started having trouble with my eyes burning or constantly watering for the past year. I stopped wearing makeup b/c my eyes bugged me so much.

My worst symptom that has been very consistent is how tired and weak I feel all of the time. I have zero energy which is frustrating b/c I used to be a gymnast and bounce off the walls.

My doctor has run a number of blood tests. My CRP is high, my white blood count and platelets are always high, and my ANA is consistently positive.

I am so uncomfortable and have felt this way for a decade now. I am 37 and should not feel this way. Inflammation plagues me. It seems like my symptoms match a lot of autoimmune diseases but SLE Lupus and MS are pretty big matches for a lot of my symptoms.

There is only one Rheumatologist in my area and they do not have very good reviews. When I saw him he ran a few tests and told me I just had fibermyolgia. Though I was told by another doctor that they just give that diagnosis when they can't figure out what is wrong with you.

What tests would you suggest I get done to rule out MS and Lupus.

Is there a place that you would suggest I go in Northern Indiana?

My mother has autoimmune hepatitis, my cousin has psoriatic arthritis, my grandfather had Meniers disease and RA and my grandma had RA.

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Replies to "It all started with dizziness about 10 years ago. I went to a Neurologist first to..."

Hi @choover22, Welcome to Connect. There is another discussion where your post will receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the following discussion where you can meet other members having difficulty finding an autoimmune diagnosis.

> Groups > Autoimmune Diseases > Undiagnosed and don’t know where to go next
-- https://connect.mayoclinic.org/discussion/undiagnosed-and-dont-know-where-to-go-next/

Since you mentioned that your worst symptom is feeling tired and weak all of the time you may find the following TED Talk by Jennifer Brea helpful.

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

If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

Make sure your doctor runs an autoimmune panel. Any doctor can order it and then the lab sends it to Mayo labs. It will check for autoimmune antibodies. New ones are discovered every year, right now I think there are 25 they check for. Also, maybe you should ask about getting a lumbar puncture. No one should have to feel sick this long!

@choover22 Sounds like things are very difficult for you right now (and for 10years!). Your symptoms sound a lot like mine did. I finally got an MRI which showed large areas of demyelination of the brain. Diagnosed with an autoimmune disease. I’m finally being treated with steroids and . What helped me was my husband taking me to a university medical center. The doctors there knew right away what was going on and how to treat it. Is there a medical center near you?