Discussions By Condition: I cannot get a diagnosis.

3 years without a diagnosis. Help me solve this mystery!

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: anon84
  • March 16, 2010
  • 02:58 PM

I'm 26, male, and going on 3 years not being well. I'll try to keep this brief but I doubt that will happen. 3 years ago I started to get diarrhea in the mornings - there seemed to be a correlation with whole grains of any kind but thinking it was still a "healthy" diet, I continued to eat "healthy". A year later I developed sleeping and anxiety problems that lasted another year. When I say anxiety problems, I mean I felt like I was constantly panicking and my adrenaline would surge throughout most of the morning and at night. Luckily I discovered sublingual B-12 and that (over the course of a month or two) completely resolved my anxiety problems and allowed me to sleep somewhat better. We're up to 2 years ago now. Things are going well and I'm feeling a lot more like myself. I still have diarrhea each morning but it's not killing me so I continue to eat "healthy" as I have been. I should specify that on the Bristol Stool scale, what I'm referring to as diarrhea would be a 6. Only occasionally would it be a 7.

Up to this point, I've been to my family doctor numerous times and seen many specialists. Normal CBC, slightly low testosterone (289), no sleep apnea. My family Dr. mostly just wrote me off as depressed and unwilling to accept the diagnosis. He gave me Prozac, Wellbutrin, Clonazepam, etc. I hated Prozac and Wellbutrin made me crazy (I couldn't take either one for more than a couple days before I quit) but I could actually take Clonazepam and get some sleep so I tolerated it before I found the B-12. Thank god for B-12!

A little over a year ago I started to get vertigo and intense brain fog/fatigue that were exacerbated by caffeine and sugar (in that I would crash and it would be worse after consuming them). I had recently quit dipping so I attributed it to withdrawal, but it just wouldn't go away. To complicate things, I developed tinnitus in both ears (worse in my right ear), a full sensation in both ears and actual pain in both ears. I started getting flash headaches behind my eyes that would come and go as soon as they started and my hands and feet could no longer stay warm. I saw every specialist available. Neurologist, Cardiologist, Endocrinologist, ENT. No one ever found anything short of a slightly low WBC. However, the ENT suggested making a dietary change so I quit eating whole wheat. Aha! The burning in my ears resolved itself, as did the severity of most of my symptoms. My stool also went from 6 to 5 on the Bristol scale (but now they partly float). At this point it was obvious that I needed to see a Gastroent. so that was set up. My colon biopsy revealed that I had microscopic colitis so I was put on Cholestid at first and although that resolved the diarrhea, it was really only treating the symptoms and created new symptoms of its own. I never really felt better and now my skin would feel like it was crawling at night. It was the worst restless-leg I have ever had. I talked with my gastroent. about doing some more food elimination and removed milk from my diet as well. BIG improvement in mood after about a week. I even went off the Cholestid and my restless leg went away immediately. It didn't take long, however, before I relapsed and I needed some more help. After a little research, I started taking acidophilus and garlic each morning. It was my hope that the acidophilus would aid digestion and the garlic might reduce swelling. ALL of my symptoms, minus a little tinnitus, completely went away. During the transition to feeling better, the flash-headaches came back for a few days but I felt great and had tons of energy. I could eat carbs without crashing, workout and run longer and harder than before. Instead of going into a fog when I would get hungry, I would just get the jitters (something that hadn't happened in a long time). I would even get constipated occasionally! All of that was great, but the best part was I would sleep like a baby at night and wake up refreshed and energized. I was hungry all the time but still lost ~5-6 lbs without trying. That lasted for 1 month exactly before I started feeling bad again.

That brings us to today. I'll just list my symptoms.
I fall asleep easily, wake after the first 4-5 hours and then toss and turn afterwards but still have to drag myself out of bed in the morning.
Extreme fatigue/fogginess sets in around 10 if I haven't eat. If I do eat, it needs to be some type of complex carb/protein fat or I'll "crash" harder and be incredibly exhausted by 11. Eventually, I'll get a bit of energy up until 2 when I crash again. If I can muster the energy to make it to the gym, I'll be energized the rest of the day but if not, I'll drag on being tired until ~6 when I get more energy/focus than I had all day. I continue to improve well into the night and feel my best around 10/11 at night. For most of my life, when I would get hungry, I would get the jitters. Now, I just slip into a fog and I can't help but think that's related. My diet consists of refined carbs/fruit/lean meat and a few veggies (mostly from lettuce). It seems like everything considered healthy to most people just gives me diarrhea. So basically, no insoluble fiber. I consume no dairy or whole wheat and no caffeine or alcohol. I haven't used tobacco in 9 months. The gastroent. recently put me on mesalamine and it does stop the diarrhea but none of my other symptoms. Also, through all of this, my tinnitus has never let up once. Only the intensity has ever changed.

Also, I've been tested for Celiac and it came back negative. Food allergy testing also showed normal responses to dairy, wheat, oats, fish, etc. I can provide more detail for any of this if necessary.

I'm desperate for help guys. It's been a long hard go of things. I try to stay positive and approach each day kinda like a science experiment, but I know this is taking it's toll on me. I have a fantastic, supportive wife and I'm managing to lead a pretty normal life despite all of this but everything is so much better when I feel normal.


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