Chronically ill without diagnosis and don’t know what to do 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.

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.

@janclaire

Try Dr Morse in Florida helped my lymph probl em

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I appreciate the recommendation but I can only afford to see doctors in the Minnesota/Wisconsin area due to the fact that I am on state healthcare insurance. Honestly I think that has been a big part of what’ve is making getting a diagnosis so hard for me but unfortunately I can’t afford to pay out of pocket and can’t afford to get off state insurance so it’s what I Ann stuck with

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@hodagwi

Hi, here is an article on this that I mentioned before. The blood test for this is a microneutrant blood test. Something to consider. Best wishes.
https://www.verywellhealth.com/the-link-between-mthfr-gene-mutations-and-disease-3232709

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@hodagwi I too found out I have MTHFR but only via 23&me doing my own raw data searching. I am heterozygous so not the worst one to have and didn't experience any miscarriages but I do wonder if it affects me someway/somehow. I don't eat much for processed food, avoid gluten but I should probably read labels more closely to be certain.

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@aeg73

@hodagwi I too found out I have MTHFR but only via 23&me doing my own raw data searching. I am heterozygous so not the worst one to have and didn't experience any miscarriages but I do wonder if it affects me someway/somehow. I don't eat much for processed food, avoid gluten but I should probably read labels more closely to be certain.

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Nice to finally know what is wrong. Yes, reading labels is good. Just about all packaged foods are enriched. Aldi's has foreign made (German foods usually) that are not enriched. Aldi's is a supermarket chain in the midwest and here in Maryland also but is German based. There are some graham crackers that are not enriched also. It will be a long process and may be slow to feel better as you stop the enriched foods and that will allow the vitamins and nutrients to get into your body and nourish it the way it is need. Can't go wrong with meat/fish, potatoes, and fresh veggies and that is what she/we eat all the time now. Canned soups sometimes have flour in them so are enriched so watch out for that. Hope this is helpful and let me know if have any questions. An issue is not taking anything that has folic acid in it but need to take natural folates and she takes folate in dose of 800mcg made by Solgar(?) and that helps her. Happy to call and have you talk to her if desired. Let me know. best wishes.

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