Undiagnosed condition - cardiomyopathy & CHF

I am now 43 yrs old. I am 6' 5" tall (195 cm), a 3XLT (VERY big bones, shoulders, hands, feet, etc. – suit size is 54-56 Long), weigh anywhere between 265 and 315 lbs, depending on where I am in my episode cycle (below).  I used to smoke (about 10-12 cigarettes per day) from 1983 until 1989. I used to be a very light drinker, about 2-3 bottles of wine a month, if that. Now, I don't even drink a bottle a month, and I rarely touch hard liquors. I never did any recreational or illegal drugs in my life. I am addicted to breads, fruits, and some sweets (chocolate), though.
I do not do sick well at all! The toughest punishment for me is to have me be in bed with nothing to do, playing sick. I am the “all go, no quit giant.”
This condition began several years ago with a deteriorating physical ability. While I was never a long-distance runner, I was in reasonably good shape until a few years ago. At first I noticed I had to slow down a lot quicker than I was used to. It progressed to the point where about 4 yrs ago, going up one flight of stairs raised my pulse and BP considerably enough that I would feel pulsations in my chest, on the sides of my head, etc. Then, it became such that the smallest physical effort, carrying a child for a minute, groceries, going up the stairs a few flights, etc., would result in a general feeling of weakness, feeling sick to my stomach, extreme muscle pain (severe lactic acidosis type of pain), chest pain/tightness, shortness of breath, pulse 110-120+, etc. Everything came back pretty much w/in normal ranges, so no explanation.
One other anomaly: I have very thick, quick-coagulating blood, type 0 Negative. After 32 hrs on 4x the recommended dosage of Heparin, the doctors gave up, because it had no effect whatsoever. I recall a test done about 22 yrs ago, after which the doctor informed me that I had a very rare type of blood, I think he referred to it as “Subtype K,” although I never paid attention to it at the time, and never had the test repeated since.
In Nov 2006, I was unable to take a shower in an enclosed shower because I felt I was suffocating. At Christmas, I had to leave a high altitude place early because I could never get enough air. I was barely able to walk. I could hear the fluid build-up in my lungs sloshing around, I had no ankles, etc.
In Jan 2007, I went to the doctor again, and this time, as a result of an echo that revealed an ejection fraction of less than 10%, I was immediately admitted in the hospital, diagnosed with a "dead heart," and told the chances were fairly slim. To the credit of the medical professionals who took care of me, I did a miraculous recovery. Less than 2 days after being admitted, I had lost 40+ lbs (of fluid due to diuretics), my repeat echo showed 39% EF, all my vitals were stabilized, except for the BP and blood sugar. The doctors diagnosed tentatively me with CHF due cardiomyopathy (unexplained), hypertension, diabetes, etc.  (I felt like the medical equivalent of having the book thrown at me!) 30 days later my EF was at 63%; 60 days later at 72%. Ever since it stayed between 62% and 72%. Ever since I was discharged, EVERY SINGLE DOCTOR who saw me said the same thing “You have one of the strongest hearts I have ever listened to/saw, etc” At the time I was admitted, my HbA1c was 10. After 90 days my HbA1c was under 6, and it stayed between 5.4 and 6.5 ever since.
At the time of discharge, I was placed on 16 different prescription meds (pharmacist refused to fill prescription until she went over the entire list with the prescribing physician!!!), 1 of which had a warning on the label along the lines of “May cause drowsiness/dizziness,” “May cause blurred vision,” “May cause headaches,” etc. As a result, I spent the following seven (7) weeks sleeping 18-20 hrs/day and have no recollection of what happened.
And now, the fun begins:
- Every two months or so, all of the symptoms listed above reoccur, plus I gain about 20-40 lbs in 3-6 days, I can feel the fluid building up in my system (feet/ankles, calves, lungs, chest cavity, abdominal cavity, etc.), become lethargic, have no energy, brain seems to slow down, BP goes up, blood sugar goes up, vitals go all over the place, shortness of breath, the whole nine yards. (I feel like a 20+ yrs old car being driven on the railroad, between the rails… everything seems to be falling apart at once!) After about a week of suffering like that (I am extremely miserable, in pain, cranky, tired, yet sleepless, etc), the water retention problem subsides, I start urinating and defecating several times a day, and in another week or so, I am back to the weight I was at before the episode started. All vitals go back in normal range, and you can never tell what I had just been through. 20+ doctors still don’t believe it, even though they’ve seen me.
- whether I am on medication or not, it makes no difference. Symptoms occur just the same.
- Whatever I eat, it makes no difference. Symptoms occur just the same. While going through one of these episodes, my blood sugar spikes, whether I take diabetic medication or not. My HbA1c is between 5.4 and 6.5 at any given time.
- during these episodes I experience burning pain in my feet (just the front half of the foot, not all of it, and the soles of my feet). The sensation is so intense, it sometimes prevents me from falling asleep. Outside of these episodes, I can barely feel sometimes, most of the time my feet are almost normal (I noticed, as thing progressed, some residual pain in my feet between episodes, and a slight numbness, which comes and goes without any pattern I can discern.
- my kidneys are ok (no Renal artery stenosys, no damage of any kind). Before the episode starts, my Creatinine is around 1.2 to 1.5. During the episodes, it goes up almost by the hour, to the point of where at the end of the episode is around 2.5. Then a week later is back to 1.2 -1.5.
I went to the best medical facilities in Southern California, the Mayo Clinic in Phoenix, AZ, the William Hitt Center, etc. I have been tested and retested to the point I was afraid to drive wearing a short sleeve shirt… I didn’t think I could convince any cop that would have pulled me over that those were medically related needle marks! I have had every single type of scan there is out there. NOTHING out of the ordinary. Sometimes, some vital signs would be “elevated, but still within range.” Red Blood cells come consistently on the low side, and white cells come consistently on the high side.
The only time I have experienced a significant improvement of this condition was in the summer of 2007, when I did a three-week  long treatment of ozone therapy combined w/  shock doses of Vitamin C. All vitals were back to normal, weight dropped, brain was working at peak power, I could walk for a while without getting sick. About a month after the treatment, everything resumed, just like it was before.
During the past two (2) years, I have been tentatively diagnosed with about 20+ different “possibilities.”  Every single one of them was eventually disproved through testing, scanning, etc. The one test I failed to complete was the stress test at the Mayo Clinic. About 45 seconds before the end of the test (which was done on purpose in the middle of an episode), I almost collapsed on the treadmill, and I had to “pull the plug.” Though other than the fact my BP had gone to 275/140, pulse to 160, and I could not catch my breath, the test did not reveal anything out of the ordinary.

[ireneo]

I'm no doctor but the first thing that popped into my mind was Marfan's syndrome. A person with Marfans has all kinds of problems with their tissues - heart, lungs, bones, etc. It's not just a matter of being a tall person. But I'm sure the doctors checked for that.

Diabetes will cause neuropathy of the extremities. As for the heart, maybe some underlying, chronic inflammation of the heart (pericarditis or endocarditis) that flares up for some reason. I just don't know. There has to be someone out there that can pinpoint whatever is causing you such grief. I'm so sorry that you're going through this.