I need help. I will try not to get into a huge story, but in order to give you guys the most info possible, that may not work ;)
First, I am a 32 year old single father. I have two kids, one of which lives with me full time, the other I get every other weekend. I work from home as a professional remixer, and occasionally I go out to DJ when the money is right, but for the most part I am retired from that.
About 3-4 months ago I went to my doctor with some mental problems... confusion, thinking "slowly" (it would take me a while to think of an answer), not being able to think of words for easy things (like "chair")... as well as some severe fatigue, a bad headache, dizzyness, nausea/vomiting, and excessive sweating.
At first he said there were a lot of people coming in with the fatigue, checked that one off to a virus, and thought I may have an inner ear infection, gave me some anti-vertigo meds and sent me on my way. That didnt work, and the fatigue and muscle weakness just got worse and worse. So he took tons of blood, and one of his residents actually thought to check my cortisol level.
They told me I had a VERY low cortisol level and wanted me to go in for a Cortosintropin (sp?) test. I went in at 8am, got the 30 minute test, and he saw me a couple days later with the results. Now, he says that at 8am a normal person's level should be somewhere in the 20's, and even when its low it should be no lower than 5.0 or so.
Mine was 0.5. After the stimulation test it was 2.3.
I dont know all my numbers, but I think my ACTH level was 17? If that means anything.
- So I was diagnosed with Acute Adrenal Insufficiency.
Anyway, I went to see an Endocrinologist, and he put me on a lot of hydrocortisone. First 40mg a day. That didnt do anything for me... then he tried Predisone. That actually made me WORSE. So then back to the Hydrocortisone... 80mg a day. When that failed to do anything, it went to 100mg a day and then finally to 160mg a day. I still was so weak I could barely get out of bed, and even the smallest chore like taking out the garbage had me feeling like I had been swimming in a lake all day long, and my head, chest, and back were COVERED in sweat.
I should also note here that by MY standards, my blood pressure during this time had taken a large dip. I would always be 120/80 almost on the dot. Usually +2/+4 to that at most, never under. Since getting sick, its gone down and down. The lowest now being 101/69. The nurses all say thats in the "acceptable range" but to me thats just not right. It drops 20 points almost overnight, coinciding with all these other symptoms, and no one sees this as a problem?
Also lately (last 2 months maybe) I have been getting pains on my right side, about where my liver or kidneys would be. It almost feels like a cramp. My doctor said he doesnt think its related, but it hasnt gone away.
Anyway, I am going on and on.... my Endo doc gave up. Said he was stumped. No idea what the cause is. I do have a couple bulging discs in my neck, for which I am on some heavy pain meds (fentanyl, percocet) but have been on those for over 18 months straight now. I also have athsma. I got two cortisone injections in my neck, and don't think that has anything to do with it, am just mentioning it to give you as much info as I can.
Point is... I can't work. I can barely type THIS much. I don't get out of bed anymore, my daughter is taking more care of me than I am of her, and all I hear from doctors is "come back in a week". I have had more blood taken than I know what to do with... The med tech had to use both arms last week cuz she had to fill six vials and the one arm started to clot.
I am sick of doctors telling me they don't know whats wrong. My Endo wanted to send me to the Mayo Clinic, but my PC didn't sign off on it (so I tried to go myself... that was something I will never repeat). Just in the past week I have been to a sleep apnea specialist (who says its hormonal) and a neurologist (who says its hormonal). I have had MRI scans of my brain and my pituitary, and as far as I know, they were normal. I have also had chest X-Ray's and head CT scans done, all nada.
Does or has ANYONE had/have anything similar? I was watching a show called Mystery Diagnosis, and someone on there has had almost all the same things as I do, only she also had incontinence (sp?). But it turned out she had a tumor. They have not done any scans of my adrenal glands, which to me seem to be a problem.
Any help appreciated, sorry for the long post :)
Joe