I am 36yo with arvd a not well known or researched heart disease. I've had many problems with little answers. My lungs stopped expanging fully, my spleen enlarged, my cholesterol shot high(349), migraines are outrageous, my one kidney drips slower than the other and so on. I stay tired most of the time and my legs sting,burn, and go numb. I take 240mg a day of sotalol, 50mg toprol xl for heart-spiriva inhaler and asmanex inhaler for my lungs-20mg crestor for my cholesterol. The sotalol has to be high or I v-tach. I do have an ICD! My heart disease is worse than most cases of it, I actually have fatty tissue taking over heart muscle. My problem is the doctors never have any clue why anything that goes wrong happens. Their respnse of I don't know and go back to work has grown old. They seem to look into what I complain about and dismiss it until it gets really bad or until I can prove that the problem really exists. They continually say go back to work, we don't know, we can't say it's heart related. We'll what can they say then. I recently went and applied for regular disabilty and my doctors don't want to(hesitate in doubt) feel out paperwork for me to get STD payments until then, because they don't know why all my problems are happening and claim I should be able work despite all these things. I have worked for 7 years with this and I've had to take periods of time off each year because of dizziness, cold sweats, swelling ankles, fainty spells, naseau, severe tiredness and on and on. Nothing has got better with time. What do you suggest I do? Can all the meds cause the tiredness? Should my doctors be willing to feel out the paperwork for STD? I have never complained of anything falsely, they eventually find the problem. Why can't they see that I'm suffering and need the STD for income until I'm approved for regular disabilty, if I'm approved?
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