I'm a 24 year old male, I've had an undiagnosed illness for eight years now. I apologize in advance if some of descriptions aren't clear, but this is hard for me to put into words and I'm doing the best I can.
Before this illness I had been healthy my entire life except for a small hole in my heart that I was born with and healed on it's own. I never had any allergies, I rarely got colds or the flu and my family history doesn't have anything serious in it that I know of.
It started just before I turned 17. It began with what I would describe as weird feelings in my head, kind of like brain fog or the feeling of spacing out. For the first couple of months of the illness I was having a lot of difficulty sleeping, anxiety and fear over not knowing what was going on. My startle response was much increased. I was generally very tired as well. About two months after it started I started to get heart palpitations which seemed to be mostly triggered by certain types of foods. Around the same time I started to get food sensitivities, especially to anything with sugar. I lost about 30 pounds as well.
To be honest, it's been so long that I can't even remember all my symptoms at the beginning of this illness, but those are some of the main things I can remember. Also, I felt a heaviness in my midsection right at the bottom of the ribcage just to the left of my solar plexus. At this point my main fear was my heart, since I had never had any type of palpitations before. I went to the doctor to have it checked out and they said my heart was fine and they thought it was just stress related.
About six months after I first started feeling badly I started to feel better. My symptoms almost entirely went away except for the heart palpitations occasionally and the heaviness in my midsection. I could eat anything I wanted to again, gained back the weight I had lost and thought I was on the road to a full recovery.
Well, about six months after I started feeling better I started to get worse again. This time all my symptoms returned and were worse this time. I started to get shaky(low blood sugar) very easily and had to eat every couple of hours to keep any energy I had. I started getting drained physically very easily from any type of exercise and my food sensitivities increased as well. Either causing rapid heart rate, palpitations or increased feelings of shakiness. My startle response became more intense, and I also started to notice a tingling/numbness in my upper back near my left shoulder blade. I also had a small period time probably a month long where it was hard for me to eat and caused intense gas and bloating for hours eating just a little bit of food. But this didn't last very long like I said.
So I went to another doctor to get more blood work and everything came back within the range of normal. Nobody seemed to have any idea as to what was going on.
Up to this point the only things that showed up on any tests were a somewhat low testosterone levels, some adrenal and cortisol imbalances that doctors thought was just from the stress I was going through and some minor bacteria found in my stomach. Nothing that would account for this severity of symptoms.
At this point my food sensitivities were so intense that my main food every day was chicken and goat milk. I started having to eat a bite of food every few minutes or I would start to get shaky and my stomach would feel empty, I could usually sleep through the night, but as soon as I got up my stomach usually felt awful and had to eat immediately. This also made it impossible for me to get any type of tests done on my stomach that they would need me to fast for which is still an issue to this day.
I also started to gain weight even though it felt like I always had to eat to keep my energy up. In the period of about a year and a half I gained about 70 pounds. About 2 1/2 to 3 years into this illness I started to develop an intense sensitivity to heat. I would get intense feelings of overheating, tingling throughout my upper torso and arms and head. I would get drained even faster than normal with any type of heat.
About five years into this I started losing some weight over the summer and feeling like I had to eat a little bit less. I was about 250 LBS at the time I started losing weight and over the course of about six month I got down to 200 LBS. In October of the same year I started to get weird reactions to the goat milk I was drinking. It started to irritate my stomach a bit and cause my heart rate to go up as well. It felt different than other reactions to food I have had, but I still felt stronger than I had in a couple of years, so I wasn't too concerned about it. In January of the next year I started to feel weaker and was more intense reaction to the goat milk. At the same time if I didn't drink it I would get a pounding heart and irritation from my midsection up through my esophagus and even shortness of breath.
On to February, one day everything just seemed to fall apart at once. I got up and didn't feel much different than the last few weeks, but early afternoon my heart rate just exploded up to around 140 and only went down to about 120 a few hours later and stayed there. I talked to one of my doctors and he thought it was just stress related.
For the next couple of weeks I started to feel weaker every day. I could barely sleep and every time I woke up I felt worse than when I went to sleep. My heart would race I would get shortness of breath and my food was giving me less and less energy. My startle response was so intense that any noise I wasn't expecting would make me jump out of my skin. Any stress made my heart feel like it was clutching, it was different than any palpitations I had before.This went on for about a month and by the middle of March I was so weak I could barely walk. I ended up going to the ER for the first time in my life, they did the normal chest x-ray, EKG, blood work and couldn't find anything. They ended up releasing me that day with basically zero to go on and feeling just as bad.
Over the next couple of months I lost any ability to walk and had to be in a wheel chair to go anywhere. I started being able to sleep again and the heart rate wasn't 120+ all the time, but things were still awful overall. I also developed a new fun symptom(I've tried to keep a sense of humor as much as possible), when I had a bowl movement my heart rate would sky rocket even without having constipation. It felt like I was going to have a heart attack. I'm talking my heart rate would go to 160-180. It was a feeling of dread anytime I had to use the bathroom. I asked doctors about it and again, they said they didn't know. I felt like I was going to die at anytime.
Around June that particular symptom seemed to go away mostly. My sensitivity to goat milk did as well. I was gaining weight again, but I was still barely getting any energy from food and in July it was to the point where I ended up going to the ER again. This time they said my reflexes seemed quick and thought I might have a neurological issue, so they did a ct-scan, but it came back normal. I was released the same day again.
I saw a endocrinologist, neurologist and gastroenterologist and none of them were very helpful. The gastroenterologist didn't even understand the connection between my needing to eat and my energy level, which seemed somewhat strange to me. Anyway, the only thing I got out of that was a positive test for H. pylori. Again, not something that would account for the severity of my symptoms according to the doctors.
In the next few months I started to feel a little bit better. I started to get a little bit more energy from food, my startle response was a little less and had a bit more energy overall. I continued to slowly feel a bit better and better. By the next March I felt good enough to start standing a bit and over the period of about two months I was able to walk like I had before I was in the wheel chair. It's pretty shocking to me that I went downhill that much and recovered at least somewhat without any medical intervention.
Since then, up to current day I feel about as good as I have since a few years ago, but still not very good overall. I'm still no closer to finding a true diagnosis and feel I need a doctor that thinks a bit more outside the box. I'm also on a type of disability that I have to go to a doctor that accepts it or risk losing my benefits, so that makes it even harder to find the help I need.
Needless to say, this has had a devastating effect on my life the past eight years in every way imaginable. I have to find out what I have going on and I won't keep letting doctors tell me I don't know or it's in your head.
I'm sorry for the length of this post, but I'm trying to give as much detail as possible. If there is anything that needs clarification or have other questions please let me know.
Thanks for any help you can offer.
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