I have been struggling to receive a diagnosis for quite some time and my condition is getting worse; I was hoping someone here could point me in a direction as the many doctors I have seen seem either confused or dismiss my symptoms as anxiety.
I am male, 23 years old, 5’9 roughly 150lb. Three years ago, I became extremely fatigued and had difficulty swallowing for no reason that my doctors could identify. I was in college at the time and I struggled to eat but would force myself to as best I could but steadily got worse and ended up catching a series of unknown viral infections several months later (perhaps from being so worn down). I moved home after graduating from college because I was so sick and ended up being diagnosed with mono. Because I was positive for EBV, I was told there was not much I could do but wait it out. I got progressively more and more fatigued (as expected) but after a year my energy level had not returned and I began experiencing a constellation of other symptoms. I started having a range of digestive problems and had a number of tests done that revealed little in the way of diagnosis.
Since then, I have developed a number of other issues: brain fog, difficulty speaking at times, more problems with swallowing, mouth ulcers, full body tremors, mood swings, loss of sensation in my limbs, poor circulation and worsening of my Raynaud’s phenomenon (which I have had for several years), cloudy urine…the list goes on.
Some tests I have had that did NOT reveal any issues: endoscopy, colonoscopy, celiac serologies, many cbc and metabolic panels (always normal aside from when I had acute viral infections two years ago), gastric emptying test, abdominal ct scan, tests for Lyme/HIV/STDs/other infectious diseases, small intestinal bacterial overgrowth test, C reactive protein, urinalysis (turbid urine but no evidence of anything off aside from the cloudiness), and some other miscellaneous lab work.
So far, the only tests that have come back abnormal are: esophageal manometry test (shows I have dysmotility of my esophagus), very low ferritin levels (which used to be normal at the start of things), reduced sweating from autonomic testing and signs of peripheral neuropathy (though I am waiting for results of small fiber neuropathy biopsy which takes some time), low complement c4 levels at 11mg/dL (but normal c3 and two negative ANA tests six months apart).
My doctors have thrown dozens of medications at me along the way to try to manage the symptoms but I admit I’m resistant to this strategy as I have historically reacted poorly to medication (and they bring their own side effects). Currently I am taking 20mg of Prozac (I had been on Celexa but did not respond well to it and had constant panic attacks) with no improvement. I take 300mg of Zantac once a day (I took Prilosec for nearly a year at the suggestion of my gastroenterologist before researching some more and realizing this was not a great thing to be on in the long term, especially if it was not helping). I also take a men’s once a day multivitamin, fish oil supplement, a gentle iron supplement that is vegetable based (again at recommendation of doctor, though this seems like a way of covering up the problem that my ferritin is low rather than identifying the cause).
I lift weights recreationally at home about 4 days a week and do yoga usually once a week; unfortunately I struggle to incorporate cardio into my routine now because I get so worn out afterwards that I end up sleeping for hours/days. When I try to get up and go on walks, I feel very distant and depersonalized like I am behind a screen which is a very scary sensation. I sleep extremely long hours and often need naps throughout the day, and cannot work (this is hard for me because I am a young guy and worked very hard in school; my quality of life has been reduced to almost nothing). My vitals are generally good at the doctor: bp fluctuates somewhat but never in dangerous territory, resting heartrate usually in the high 60s/low 70s, no fevers since the mono three years ago.
I realize this is a lot of information but I wanted to be thorough. It has been such a long and upsetting journey for me – to work your hardest but feel like you are in constant discomfort and exhausted. My doctors right now seem to think “there’s something going on, we just don’t know what” and the intervals between appointments can be months. There are days when I am so miserable I just want to go to the emergency room, but I have done that before and they don’t do any tests aside from the basics and then discharge me with no way of coping. I also am putting such a financial burden on my family with the costs of my healthcare.
I have had to learn to advocate for myself throughout this process, to let people know that even though they don’t see anything wrong in the easy tests that I FEEL horrible. It took two years of people saying it was “just anxiety” when I said I was having trouble swallowing before someone ran a manometry test and found there were some functional issues. So I end up having to research on my own and try to get my doctors to look into things when they want to just sent me out the door with medications. I was wondering if my symptoms could be something autoimmune? I feel very strongly that my symptoms are consistent with things like systemic scleroderma (raynauds, esophageal dysmotility, low c4 complement) or even multiple sclerosis (with the tremors and visual changes, EBV history, etc.). But no one will order an MRI of my head. And the ANA was negative so no one wants to look further into collagen vascular diseases. My neurologist seems to think I have damage to my autonomic nervous system, which is also very scary (reduced sweating function, constantly dilated pupils).
Does ANYONE have an idea or hopeful comment that could help me? I know my anxiety is out of control but after three years of misery and a downward trajectory, can you blame me for worrying? I just want to get better but it seems all the things I am likely to have are lifelong and I don’t want to live this way anymore.