Chronically ill without diagnosis and don’t know what to do next
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
– hives (particularly when upset but often without obvious cause)
– joint pain
– joint stiffness
– loss of appitite
– brain fog
– trouble concentrating
– extreme fatigue
– vomiting, sometimes without even feeling ill beforehand
– 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.
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@beanie300 What I don't see in your tests anywhere is gluten intolerance or Celiac disease. You describe a lot of GI type pain, joint pain, skin rashes, brain fog, numbness/tingling, mouth ulcers, nausea, diarrea… that collection could be a gluten problem. Your description gives so much detail and shows how much work you've done to try to figure this out. A lot of doctors only look at things inside their own specialty, so maybe they are missing this. You can test yourself for this if you stop eating all foods containing gluten. You need to study to do that as there are many hidden glutens in processed foods. If you eat plain meat and veggies for a few days with no spices or sauces, and no products made from grains (except rice or corn which are gluten free), you can see if you feel better. I can't eat gluten or I get very ill. I took gluten out of my diet 20 years ago when no doctor would test me for it and a lot of doctors didn't believe it was a real problem and my symptoms cleared up immediately. Also know that just because there are gluten free junk food products now, that doesn't make them healthy. Sugars and processed carbs are just that and can promote diabetes with or without gluten. You may know in just a couple days if you eliminate this from your diet. That could be part of what could be wrong, and it would be a start. Sometimes it can be a number of things to discover in steps to get back to health again, and if you get one problem out of the way, the others may be easier to deal with.
Here is a link to the Celiac Disease Foundation about the symptoms. https://celiac.org/about-celiac-disease/symptoms-of-celiac-disease/ and Mayo's link about Celiac disease https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220
I know that the large intestine passes on the left side on it's way to the rectum, and if that's inflamed, you could feel pain there. Celiac disease is an inflammatory condition where the body attacks the GI tracts because of gluten (sort of)… it's actually the protein gliaten which is attached to the gluten that causes the trouble when they named this, but at first they thought it was gluten. These are found in almost all grains. Humans did not evolve to eat grains, but at the time we cultivated grains as a food supply, it allowed our species to proliferate. There is a good book about all this called "Going Against the Grain". Reading that changed my life.
Thank you @jenniferhunter it sure couldn’t hurt to try! I am desperate at this point. It doesn’t sound like something that will fix all of my symptoms but I doubt anything will at this point and it would be a great first step if it does help! I have a friend with celiacs so she is gluten free but I honestly hadn’t even considered that it could help my symptoms.
@beanie300 I know what you mean. I didn't believe it at first either. Gluten causes autoimmune issues and makes a person at greater risk for other autoimmune diseases and cancer of the GI tract. Ask your friend about her experience. Many of your symptoms could be related to gluten and wheat allergies. I had a lot of these myself. What convinced me is that I didn't eat any gluten or bread (kind of by accident), for a few days, then I ate some leftover bread from a restaurant and in 10 minutes, I felt like a load of bricks had been dropped on my head, I had asthma, and could hardly breathe, and a bad headache, and trouble staying awake. My husband would get scared and want to send me to the emergency room because I could not stay awake long enough to use my asthma inhaler at about 30 minutes. All of that within minutes of eating bread made from wheat. Then for a few days, the GI disturbances that followed. This is so easy for you to test and you can change your life right now if this is the problem.
Well I will be sure to give it a try. Thank you for the advice @jenniferhunter I’ll let you know if it helps.
Dear @jenniferhunter in reply to @ beanie 300,
I am also supposedly on a Gluten Free diet; as I was suffering from Migraine Headaches, asthma, epilepsy, and great difficulty staying awake! However, my friend told me to stick to my diet, because I now realize the connection between the gut and the rest of my body, including my hair, skin, and nails! I recently bought a book entitled "Paleo in 28" by Kenzie Swanhart of CaveGirlIntheCity.com 4 Weeks, 5 Ingredients,and 130 Recipes! The book is great, and has really given me so many new recipes; which are HEART HEALTHY and absolutely DELICIOUS!
Good luck and I hope you feel better soon!
Glutin free are you allowed meat? It is difficult fir me. I live in the best of the best Independent living.they call us a retirement community. The chef offers many options. But it is difficult fir me. I tried ham and pea soup and was sick for a day. No pork for me. I hate it as all the good food includes meat.
@oregongirl Gluten is a plant protein in grain, and not in meat, however if that meat is ladled with gravy that was thickened with wheat flour, there is your gluten. Gluten can be in seasonings, in vinegar (if made from wheat), vanilla, etc. If you have plain meat that wasn't cooked on the same spot on a grill where they seasoned something, it will be gluten free. Ask them to use a different clean pan to cook your food. You have to ask questions because a lot of people don't understand and put seasonings in there by habit, or a pickle on the plate with gluten containing vinegar, or the food is cross contaminated by a serving spoon or the grill. Soups can contain flour as a thickener. Ask the chef to see an ingredient list, and keep a journal of what makes you feel ill, and then you need to find out what is in it. Keep a list of what you are allergic too because that is the only way to figure it out unless you want to go through food allergy testing with a doctor.
Hi, Sorry to hear about all those problems. My wife has had a lot of those symptoms and yet her blood tests came back negative. Finally at John's Hopkins in Baltimore they diagnosed her with MTHFR, She has a double gene mutation which makes her allergic to all foods enriched with folic acid. Most breads are enriched. Most pasta are enriched. Some white rice is enriched. This is methyleneterahydrofolate reductase or MTHFR. Elevated levels of homocystines in the blood. Her normal blood levels were fine but the cells were not getting the B vitamins since they were blocked from getting from the blood to the cells by the MTHFR. You can google MTHFR for more information. This is a gene blood test instead of a regular blood test in order to determine if you have that. There are two kinds of MTHFR. It is inherited and both her parents had it but showed no signs but she got both genes so was worse. Her parents also grew their own food and nothing was enriched in those days. Again, her present diet is fresh vegetables, meat and potatoes. A lot of people can minimize symptoms by going on a gluten free diet since glutens are enriched. Gene Position C677T. She is reading off some of her medical records. A1298C is the other gene. Once she stopped eating enriched foods her brain fog, chronic pain, tiredness, etc. High homocystine levels are often an indicator. 23 & Me gene testing kit can test for it if the doctor won't test for it but a doctor needs to read the results. She takes a folate for that and NOT a folic acid supplement. Folic acid=enriched which is bad. Hope that is another avenue for you to investigate.
I chose to read your post, bc the subject line sounded exactly like what I'm going through (except that, when I got to the end, I discovered that I'm almost twice your age). I say that to say that over the years, I have done a lot of research on what's going on, what it could be, what tests to do to find out, etc.
First, the human body kind of responds to whatever is wrong in very similar ways. The system must be determined first (so you know which specialist to see), the specialist should (theoretically) know which primary tests to run to find out what direction to take further tests to fine tune a dx and be able to tell you exactly what is going on and what to do about it. Unfortunately, we (ppl, Americans) are living longer and are sicker than we have been.
The second thing I wanted to say was that the first few things you said sounded to me like an immunodeficiency disease.
I hope you find answers!
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.