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Hello everyone, new member here. Please take the time to read my story as I would value your input.
I’m a 21 year old male and I have been having some debilitating symptoms for a number of years. For about 7 years now I have been feeling extremely fatigued and not right. I feel like I have been drugged by something, I feel soo ill and strange. This feeling is constant, day in and day out. Never goes away. The more I sleep, the more noticeable it is. It is less noticeable when I’ve slept very little. I guess it’s a little bit like that disoriented feeling one gets immediately on waking up, except that it lasts the entire day. Or maybe it's a bit like the flu too? This feeling slows me down so much, every motion takes more time because I'm just soo ill. Sometimes I feel like I'm going to collapse or like my system is slowing down so much that my heart is going to stop.
I have other symptoms too, which include constant pain in arms and legs along with constant tingling sensation. I also have memory lapses, or mini black outs, memory problems, concentration issues, brain fog. Also have IBS symptoms, but not sure if this is related. I yawn all the time and my body sort of feels like it’s sleepy, but at the same time I sleep a good amount everyday. I’ve seen every specialist except a sleep specialist so I wonder if this is something I should look into? To be honest I don’t want to see another doctor again as I’ve seen specialist after specialist without answers. Rheumatologist, neurologist, ENT doc, GI doctor, etc. No answers.
Only a very high RF (624) and mildly elevated IgM, but I was told these don't mean anything without further findings and we've been really thorough with excluding diseases and I've read on a lot of illnesses and none match my symptoms.
I've had a gastroscopy and colonoscopy with biopsies. From the first gastroscopy I was diagnosed with EoE (4 years ago) but I had a new one not too long ago and it was normal. I do have acid reflux which I control with pantoprazole 20 mg daily. Colonoscopy was normal. I've also had brain and full spine MRIs and they were normal. I've had ultrasound of my stomach and pelvis, EKG of heart and X-ray of lungs and lungfunction test, test for bacterial overgrowth where you drink a sugar solution and breathe in many tubes. All normal. I've had all kinds of blood tests. I'm now on Tegretol for the pain and it helps a bit.
Can anyone relate? I don’t know what’s causing this but do know that I need help and cannot do this on my own. I cannot think straight and I can hardly function on a day to day level.
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