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.

Liked by lucky1038

@jenniferhunter

@hopeful33250 Teresa, my mom had parathyroid surgery 4 years ago at age 85. Yes, she also had osteoporosis and thin bones and the parathyroid problem was pulling calcium out of her bones in spite of prescriptions for hardening bones. They tracked calcium levels for several months before it was bad enough to operate, and she had some cognitive issues because of it that got better after parathyroid surgery. We got her through the surgery, and a week later she fell and broke her pelvis, her foot and her ankle which changed everything and contributed to the disability that she now has. I was there when it happened. I didn't see her feet during the fall, but I suspect that either she twisted her ankle, or the bone fractured in her foot when she stepped on it causing the fall. In time, the foot and pelvis fractures caused her foot to twist after it healed and it got to where she could not straighten it and stand on it because all the tendons shortened. There was surgery for that and the Achillles tendon was lengthened by cutting it and splicing it back together, and a few muscle attachments on the foot were moved. She can't walk well and uses a wheel chair now. We are awaiting the results of a bone density scan from this past week.

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@jenniferhunter What a lot to go through. I hope she recovers. It sounds like a difficult injury. Keep me posted on how she is doing.

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@hopeful33250 It was a tough recovery and that is what started the live in care giving I did for both my parents. I think her recovery is about as good as it's going to get. Her feet were deformed because of arthritis before the injuries, so they just can't get back to a normal function for walking. The choices back then were to fuse the ankle or splice the tendons which was a lesser impact and better function for an outcome in hopes of getting her walking again. The tendon surgery was in 2016 and she has neuropathy in her feet, so standing on her feet is painful anyway. She has a special brace for the ankle, but doesn't want to wear it. She is content to use a wheelchair and can transfer herself and she wouldn't be safe on her own trying to walk unless someone is there assisting, so she agreed to use a wheelchair because she wants to live on her own. Being sedentary creates other risks like blood clots in her legs that she has had, so she takes Eloquis. She doesn't drive anymore, so I check on her, and take her to doctor appointments and get her groceries. She's happy to sit on the couch and watch TV with her dogs.

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@jenniferhunter

@hopeful33250 It was a tough recovery and that is what started the live in care giving I did for both my parents. I think her recovery is about as good as it's going to get. Her feet were deformed because of arthritis before the injuries, so they just can't get back to a normal function for walking. The choices back then were to fuse the ankle or splice the tendons which was a lesser impact and better function for an outcome in hopes of getting her walking again. The tendon surgery was in 2016 and she has neuropathy in her feet, so standing on her feet is painful anyway. She has a special brace for the ankle, but doesn't want to wear it. She is content to use a wheelchair and can transfer herself and she wouldn't be safe on her own trying to walk unless someone is there assisting, so she agreed to use a wheelchair because she wants to live on her own. Being sedentary creates other risks like blood clots in her legs that she has had, so she takes Eloquis. She doesn't drive anymore, so I check on her, and take her to doctor appointments and get her groceries. She's happy to sit on the couch and watch TV with her dogs.

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@jenniferhunter Your mother sounds like a contented person and a real joy!

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@beanie300 – I know how tough your life has been. Sounds like my daughter’s story. After years of multiple health problems- appearing not connected- she was diagnosed with Cushing’s disease caused by a small pituitary tumor. This was the area that is involved in cortisol production. She was 27 at diagnosis, but was tested on and off through the years for endocrine problems. She would have many infections, tachycardia, type 2 diabetes, bipolar diagnosis, severe body pain- fibromyalgia. Also severe mono freshman year, had mono before. She also never had fevers, low temps
Your serum cortisol was normal and low. They typically test 24 hr urines more than once, since cortisol is not always peaking.
I just wanted to share my daughter’s search for an answer. Keep looking!!

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@astaingegerdm

@beanie300 – I know how tough your life has been. Sounds like my daughter’s story. After years of multiple health problems- appearing not connected- she was diagnosed with Cushing’s disease caused by a small pituitary tumor. This was the area that is involved in cortisol production. She was 27 at diagnosis, but was tested on and off through the years for endocrine problems. She would have many infections, tachycardia, type 2 diabetes, bipolar diagnosis, severe body pain- fibromyalgia. Also severe mono freshman year, had mono before. She also never had fevers, low temps
Your serum cortisol was normal and low. They typically test 24 hr urines more than once, since cortisol is not always peaking.
I just wanted to share my daughter’s search for an answer. Keep looking!!

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@astaingegerdm wow, you sound so upbeat and positive! I love it! How I’d your daughter doing now? Has she gotten her life back on track?

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@becsbuddy

@astaingegerdm wow, you sound so upbeat and positive! I love it! How I’d your daughter doing now? Has she gotten her life back on track?

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@becsbuddy – thank you for asking. She is back to a new normal. It has been very difficult for her, but she is tough in a way and has worked hard to become self sufficient. She moved home to recover and she is still here- not forever though- waiting to save up enough to live alone.

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Have you considered seeing someone who specializes in autonomic disorders? I am a white female in my late 20s and this sounds similar to me. That is the direction I am headed in. I also had mono more than once. My major issues are dizziness, excessive sputum production causing me to choke, spitting up stones, abdominal pain, shortness of breath, and I was diagnosed with neurocardiogenic syncope in the past. I recently saw a neurologist who thought I might have POTS but couldn't say so definitively because my tilt test results were borderline and the test performed while I was on propranolol. I also share these symptoms of yours: – joint pain
– joint stiffness
– brain fog
– trouble concentrating
– extreme fatigue
– 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
-numbness and tingling in my hands and feet at times and especially when lying down.
i have mild dermatographia too but I was told that was nothing more than annoying. As a child the hives things happened to me too if i sweat. I currently get night sweats too.

Hope your situation improves!

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Truthfully I dont think you had a cold all your life. I think something is irritating your stomach, not necessarily food. Please think of seeing specialists someone else. Find who are speciasts. Stomach specialists can't think of the name at 4 am
Like internests, maybe a doctor of osteopathy. They treat the body differently than MD kind. Doctors tend to say it's nothing when they cant get a diagnosis. Maybe contact Mayo Clinic directly, problem with these forums you get 10 different diagnosis.

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@julianned

Have you considered seeing someone who specializes in autonomic disorders? I am a white female in my late 20s and this sounds similar to me. That is the direction I am headed in. I also had mono more than once. My major issues are dizziness, excessive sputum production causing me to choke, spitting up stones, abdominal pain, shortness of breath, and I was diagnosed with neurocardiogenic syncope in the past. I recently saw a neurologist who thought I might have POTS but couldn't say so definitively because my tilt test results were borderline and the test performed while I was on propranolol. I also share these symptoms of yours: – joint pain
– joint stiffness
– brain fog
– trouble concentrating
– extreme fatigue
– 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
-numbness and tingling in my hands and feet at times and especially when lying down.
i have mild dermatographia too but I was told that was nothing more than annoying. As a child the hives things happened to me too if i sweat. I currently get night sweats too.

Hope your situation improves!

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@julianned I’m just wondering what you’ve heard lately from doctors? How long have your symptoms been going on? Have you thought about seeing a gastroenterologist?

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@astaingegerdm

@becsbuddy – thank you for asking. She is back to a new normal. It has been very difficult for her, but she is tough in a way and has worked hard to become self sufficient. She moved home to recover and she is still here- not forever though- waiting to save up enough to live alone.

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@astaingegerdm How has your daughter been doing? I’m sure it’s nice to have her at home, but you want her to get her independence. Do you think she’ll worry about you (when she moves out) as much as you’ll worry about her?!

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@julianned

Have you considered seeing someone who specializes in autonomic disorders? I am a white female in my late 20s and this sounds similar to me. That is the direction I am headed in. I also had mono more than once. My major issues are dizziness, excessive sputum production causing me to choke, spitting up stones, abdominal pain, shortness of breath, and I was diagnosed with neurocardiogenic syncope in the past. I recently saw a neurologist who thought I might have POTS but couldn't say so definitively because my tilt test results were borderline and the test performed while I was on propranolol. I also share these symptoms of yours: – joint pain
– joint stiffness
– brain fog
– trouble concentrating
– extreme fatigue
– 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
-numbness and tingling in my hands and feet at times and especially when lying down.
i have mild dermatographia too but I was told that was nothing more than annoying. As a child the hives things happened to me too if i sweat. I currently get night sweats too.

Hope your situation improves!

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@julienned Welcome to connect where we all care about each other We aren't Dr,s but I wanted to ask about you pain in your ribs and hard to breath Have you seen a lung Dr. ? The reason I ask is there is a condition called pleurisy that sounds like what you describe .

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@lioness

@julienned Welcome to connect where we all care about each other We aren't Dr,s but I wanted to ask about you pain in your ribs and hard to breath Have you seen a lung Dr. ? The reason I ask is there is a condition called pleurisy that sounds like what you describe .

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Hi @becsbuddy and @lioness

I have been experiencing symptoms for 9 months, however there have been several "red herrings" if you will–they believe I had mono at the start of it all, even though I had it already, and I also had staph in my lungs during this. I have seen several pulmonologists and they do not believe my symptoms are lung related. I do have some mild inflamation in the lungs, but I was told this is likely to be asthma and I have been prescribed three inhalers, two nasal sprays, and one pill. None of those have made a difference. However, I have recently gotten some relief from gastroenterology at Mayo. I saw a local gastroenterology who, without examining me, told me that this was all in my head. Luckily, I was fortunate enough to see Gastroenterology at Mayo and they found a pelvic floor disorder, specifically the anal sphincter not relaxing. I got into a pelvic floor pt program ans it has really helped with my abdominal pain and shortness of breath. I have also found a new gastroenterologist at home, and he thinks functional dyspepsia may also be at play. Although I have many other symptoms, any relief is welcomed! I also am returning to Mayo next week and they will be repeating a lot of the gastroenterology tests that I had performed locally.

Julianne

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@becsbuddy

@astaingegerdm How has your daughter been doing? I’m sure it’s nice to have her at home, but you want her to get her independence. Do you think she’ll worry about you (when she moves out) as much as you’ll worry about her?!

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Becky,
My daughter is ready to leave, but she does not have the funds to move away from here to get a job paying enough to live on. Catch 22. We now live in the south where pay is ridiculously low.
We probably would worry about each other!

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@beanie300 – me again! Wanted to check on you to see if you have more answers?
Reading about all your symptoms again makes me think many could be connected to autoimmune disease- maybe even more than one. The problem is that the right tests may be normal when tested. However, that does not mean that tests are always normal.
Have you ever been tested for celiac disease? Autoimmune disease of intestines in response to gluten. What’s interesting is that celiac disease could affect other parts of your body – as well as coexisting with other autoimmune illnesses of thyroid and joints etc. It has always been considered very rare in this country, but lately studies have shown it’s much more common than previously thought.
Could you maybe check back with your doctor (s) if you were tested? I think nowadays it’s part of immune testing.

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@julianned

Hi @becsbuddy and @lioness

I have been experiencing symptoms for 9 months, however there have been several "red herrings" if you will–they believe I had mono at the start of it all, even though I had it already, and I also had staph in my lungs during this. I have seen several pulmonologists and they do not believe my symptoms are lung related. I do have some mild inflamation in the lungs, but I was told this is likely to be asthma and I have been prescribed three inhalers, two nasal sprays, and one pill. None of those have made a difference. However, I have recently gotten some relief from gastroenterology at Mayo. I saw a local gastroenterology who, without examining me, told me that this was all in my head. Luckily, I was fortunate enough to see Gastroenterology at Mayo and they found a pelvic floor disorder, specifically the anal sphincter not relaxing. I got into a pelvic floor pt program ans it has really helped with my abdominal pain and shortness of breath. I have also found a new gastroenterologist at home, and he thinks functional dyspepsia may also be at play. Although I have many other symptoms, any relief is welcomed! I also am returning to Mayo next week and they will be repeating a lot of the gastroenterology tests that I had performed locally.

Julianne

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@julienned Without knowing what you just posted it was just a suggestion about pleurisy as it is very painful when you breathe but if you and the Dr.s think its all G.I. problem that's great and hopefully you will begin to start to feel better Mayo is a good place for you to be

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