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

Posted by beanie300 @beanie300, Nov 7, 2018

I am posting here in hopes that someone out there has experienced something similar or can at least tell me where to turn next when it comes to figuring out my illness. A friend of mine who has lupus said it sounded like it could be autoimmune but I really don’t know anymore!

The following chunk is going to be a long medical history and I apologize, I just want to give as much information as possible in hopes of getting help.

I was born premature but had amazing algae scores and was sent home that day. My mother tells me I was always sick as a baby with chronic throat infections of some kind or other. She made the doctors remove my tonsils before I was 2 in hopes that it would help but it didn’t seem to. Growing up I remember always being sick. I seemed to get every bug going around but was always especially susceptible to strep throat infections and sinus infections. I was sick so much that by highschool I am pretty sure I only was actually able to attend around 2/3 of the total days in the school year. Maybe even less than that and this wasn’t me staying home with colds, this was constant stomach flu, upset respritory infections, and of course strep throat. I also had constant hives and dermatographia since I was young and still have it to this day! The doctors always wrote it off, saying it was probably a food allergy, but never really looked into it. I also never ran fevers as a kid and instead run at a constant 97.6.

In 2016 my constant bad health seemed to take a turn for the worst. Right after graduating highschool I got so sick I was bedridden for the whole summer. I was throwing up, having joint pain, and sleeping all the time. No fever but I NEVER run fevers. After a month of it my mother took me in to my family doctor. She ran a mono test and Lyme test which both came back negative but she was sure it was mono so she told me to come back in a few weeks. I did but the test was negative again, and then again when I came in another month later. My white counts were high but they couldn’t figure out what was wrong other than that. Finally after 4 months I got better and stopped going back to the doctor, just in time for me to go to my freshmen year of college.

I made it through my first semester, despite the fact I got stomach flu and strep a few times but then part way through my second semester I got sick again. I was throwing up to the point I had to be hospitalized for fluids. All of my lymph nodes were so swollen I didn’t even look like I had a neck and was having a hard time swallowing. This time it turned out I actually did have mono. I had to leave my college and go home to recover. It took a total of about 4 months to get better but I never felt 100% again after that. My doctor told me it could take up to a year to feel fully better so I decided to take time off of college and get a job.

The job lasted about three months. I was so tired in that time that I would get up to go to work, struggle through my shift, go home, and immediately go to sleep. I was only awake about 10 hours a day but I figured it was just because I wasn’t used to working and would adjust. Then I started developing severe joint pain and stiffness, to the point that it was hard to get up off the couch simply because I couldn’t unbend. Both of my parents have rheumatoid arthritis so I assumed it was that and went in to my doctor for testing. I was only 20 and knew I shouldn’t be feeling as old as I suddenly felt. She ran an ANA that came back normal. A week later I passed out in the shower. My parents and I assumed maybe the water had been to hit and left it at that. Another week later I passed out at work. The fainting episodes became a normal part of my life which led to me quitting my job.

I went to see my primary physician again but she was clueless. She ran a complete blood count, metobolic panel, and tested me for Addison’s disease. It all came back fine aside from a slightly elevated white blood count. She then referred me to doctor number 2, an internist.

Doctor number 2 was probably the best I had ever seen. Listened to my story then tested me for dermatographia before I had even mentioned the hives or dermatographia. He sent me to an allergist.

Doctor number 3, the allergist. I explained the dermatographia and the fact that I had it, along with hives, since I was a kid. We had never been able to link the hives to any food and explained that sometimes I would break out in hives because of the heat or because of crying or getting stressed. He told me he couldn’t test me with the scratch test because I had dermatographia but that he could test my blood for allergies. He told me he didn’t think this would be helpful however because the would only be able to test for a few things and he said my hives sounded idiopathic. I went home without the test.

I followed up with my internist, doctor number 2, but while the nurse was taking my vitals she found I had a heart murmur. I was sent for an ultrasound of my heart and they found I had a mitral valve prolapse but told me it was nothing to be concerned about. I went back in later for the follow up and the nurse took my vitals and found I had a heart arythmia. They gave me a 24 hour heart monitor. I only actually ended up wearing the monitor for 20 hours because the sticky pad things they used caused my skin to blister up and peel off.

The cardiologist I saw, doctor number 4, told me my heart murmur was benign and then went on to suggest that maybe I was on too many medications due to the fact that I take an anti anxiety, and antidepressant.

Back to doctor number 2, my internist. He gave me two different anti-histamines and sent me home in hopes it would improve my symptoms.

All of my symptoms kept getting worse. I developed brain fog, trouble concentrating, headaches, and none of my previous symptoms improved. I turned to the internet in hopes of figuring out why I was fainting and read about postural orthostatic tachycardia syndrome or POTS for short. I went to my doctor that week and asked if he had ever heard of it. He told me he didn’t think that was what I had, as it was rare, and sent me home. My mother convinced me to go back and demand to be tested, and it turns out I do have POTS. On an average day, my heart rate laying is 55 and it jumps to 130 when I am standing.

Thankfully now that I know what is going on I was able to start managing symptoms and hoped it would help with everything from the fainting to fatigue, joint pain to brain fog.

I started developing new symptoms. My brain seems to scramble words when I read now or it messes up grammar. I have a persistent pain in my left side that doctors can’t explain. My rib cage in the front on my left side also goes through flair ups where it hurts when I breath and I have been developing migraines.

The fatigue got worse until I was only awake about 2-4 hours a day total and all of my lymph glands swelled up again. It felt like when I had mono so I went in to try and figure out what was going on. My internist sent me to doctor number 5, an infectious disease specialist, who told me I had a mono reactivation. At this point it had been exactly a year since I left college with my first bout of mono. He said it was really rare and he wanted to test my immune system. He ran a complete blood count, C-reactive protein test, t-cell test, and a few others. Everything came back normal.

My doctor said he had no idea why I got mono again and seems to have no idea what to do with my other symptoms! I want to ask for more tests but I don’t even know what tests to ask for anymore or what doctors to ask to see and I am afraid they are going to diagnose me as a hypochondriac!

Currently my symptoms are
– dermatographia
– hives (particularly when upset but often without obvious cause)
– migraines
– joint pain
– joint stiffness
– Nausea
– loss of appitite
– brain fog
– trouble concentrating
– extreme fatigue
– vomiting, sometimes without even feeling ill beforehand
– dizziness
– pain in my left side, about where my spleen is, but doctors say my spleen is not enlarged
– pain in my ribs sometimes when I breath that lasts a few hours
– no fevers ever.
-numbness and tingling in my hands and feet at times
– mouth ulcers. (I have had these since I was a kid. The come and go. I sort of get break outs of them)

Anyone have any ideas? Anything helps. I just want to go finish college and move on to my career but can’t do that while I am this sick! I am a 21 year old white female if that helps anything.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

arunpandeyco | @arunpandeyco | Nov 15, 2019

In reply to @becsbuddy "@arunpandeyco Good morning. I’m so sorry that your daughter is so sick. I’m going to the..." + (show)

Thank you so much for your quick reply and appreciate your concern. We are currently seeing Dr. Simon Oh in Denver who is really good and diagnosed her with SFN. But we have no underlying cause determination as most of the tests except the ACHR has come out negative. I would like to get a second opinion and will give the UC Health a try to see if they can do some further diagnosis. She did have higher level of B6 and low B12 which has been corrected now. I will definitely keep you and others posted just in case it is useful for others. Thank you so much.

Becky, Volunteer Mentor | @becsbuddy | Nov 15, 2019

In reply to @arunpandeyco "Thank you so much for your quick reply and appreciate your concern. We are currently seeing..." + (show)

@arunpandeyco I hope this link will help https://www.centerformultisystemdisease.com/contents/about/about-dr-schofield This is the website for the doctor I mentioned. She is also at UCHealth

arunpandeyco | @arunpandeyco | Nov 15, 2019

Thanks for the link. I will look further and try to make an appointment. Appreciate it.

leslon | @leslon | Nov 19, 2019

sorry about your health I could not read it all but would like to responded. I feel the pain I have dealt with all but not at same time frame. I have a body that doesn't recognize pain mostly symptoms and my stories can get long but I had surgery today for something that started with multiple bathroom trip at work last two hours of shift couldnt leave. Had 4th ER visit this month with sparms and or short of breath and stroke symptoms. I had a stroke small one in 2015 two days after a endoscopy and colonoscopy that came back normal along with all other test since 2009 for ms, heart, voice, swallowing,pulmonary, panic attacks, migraines,for ticks,allergies.2010 diagnosed with fibromyalgia without the so called pain. believe it is correct pain is getting recognized more and have added things to it.
Go with your gut feelings and push forward one deep breathing at a time. Watch out for older equipment reading your test and I don't see where they have used DYE to see thingsand look at who dose the readings. Get a doctor (good luck), that will listen to your whole body and not two sec here and there.
My gi troubles started in June and have not let up much -created super fibromyalgia flare up current dr dosen't belief it or a stone could cause all my problems. my surgery today was for a kidney stone never had one before. it was on first ct with dye in July never told me about it until got to GI aug.when a she said needed fix before colon issues fix. Other doctors don't think this stone can be problem. Well long story 6th kidney dr today could not get stone was going to place two stent then go back for it and stone 90 days from today. plans Changed again pee hole(sorry) to bladder to tight to get tool up got one stent and next surgery for Dec 11 with possible of finish this.
Hugs gently and purple butterfly angle for your silent illness.

John, Volunteer Mentor | @johnbishop | Dec 17, 2019

In reply to @choover22 "It all started with dizziness about 10 years ago. I went to a Neurologist first to..." + (show)

@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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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.

nire | @nire | Dec 17, 2019