jimells

Thankyou for the link. I will definitely study that info. I like your approach. I realize of course how easy it is to damage their delicate egos. It's a shame, really, that an informed patient is perceived as a threat. But when all they want to do is try to sell me colonoscopies and PSA tests while ignoring the fact that my life is wrecked, well, it's hard to bite my tongue.

Two weeks ago I saw a rheumatologist. It was a seven-hour round trip drive to watch the doctor spend 20 minutes typing into his computer. Then he handed me a stack of lab orders and practically pushed me out the door. The physical exam lasted about two minutes: he watched me raise my arms. I had to check to see if I was in a doctor's office or on an assembly line. Still not sure which one it was. So anyway I finally talked to the doctor's assistant today. None of the tests show anything. I was told to see a neurologist -- it was a neuro who sent me to the rheumatologist ("I can't help you ... I don't know who can.") The assistant also said something about possible fibromyalgia, but the doctor has no intention of following up on this. Isn't fibro supposed to be one of 'their diseases'? Did he shove me out the door when he noticed I'm on Mainecare and therefore won't get much money from the state? Right from the beginning, before I went for the appointment I told the office staff I thought I had POTS. The doctor said he doesn't know about POTS, it's not one of his diseases, and made it clear he has no intention of finding out what it is, or if I have it. The assistant also suggested I see an endocrinologist. Do any of them know anthing about POTS? Is there even one doctor in the entire state of Maine that has heard of POTS?? Going out of state is not an option, unless I can find an institution that takes charity cases(yeah, right). I tried that route a year ago at the UMass hospital in Worcester Mass. The neuro might have actually tried to help me, but the institution made it impossible for me to follow up. I spent a year fighting with those people, even though I made it clear from the beginning that I am nearly destitute from the disease. I live on food stamps and $300 per month, from a part time job. I've been fighting with the Disability Denial Service for over three years. I tell every doctor I see that I think I have POTS, and to please confirm the diagnosis or, if I don't have it, what is my problem. They never evaluate for POTS, and they never really look very hard to find the problem. Must be all in my head.

I recall trying some homeopathic something or other a few years ago. It was a waste of money. Recently I heard a report that homeopathic only works on people who believe in it. That leaves me out. Is there any truth to the rebound headache stuff? A few years ago a 'specialist' wrote in her report that I had rebound headaches. And the evidence? I had denied having rebound headaches, so that proved that I had them. Nice logic. Her recommendation was that I should take nothing for the migraines. Real useful.

Fictitious, I grew up in Derry. I don't go there anymore - it's a bit crowded for me... You have every reason to be grouchy. The medical industry in this country is completely dysfunctional. It occurs to me that when someone with a serious chronic illness actually gets better, it's an accident! I tried to get help at UMass Worcester. It's likely the neuro I saw once might have actually helped me, but the institution is absolutely impossible to deal with. After a year I am still fighting to get charity care to cover all the bill. I needed my records, it took a month to get them, and they came with a $20 invoice from a company I never heard of (I threw it away. If they want to sue me, they'll have to take a number!) I agree with the other folks that having a good PCP is absolutely critical. Since their main purpose seems to be to act as a gatekeeper, if they keep slamming the gate closed, there's not much point. When a person has a PCP who actually believes the patient is sick, AND admits they don't know everything, AND is willing to do some research, AND is actually trying to help the patient, well, you've struck gold.

Thanks for the help, Toddm. The answer I'm looking for right now is, "Where the Heck is the neuro referral you promised me??" Erik, is it ever not hot in Hawaii?

Well I did the test last night and the meter said 83. This was after fasting about 10 hours. According to Wikipedia, it's supposed to be 70 - 100 after 12 hours. I ate a banana right after the test - it sure tasted good. The technology of those little meters is amazing. I don't understand why they don't use them in the doctor's office instead of ordering an expensive blood draw and expensive hospital lab tests. I probably just saved the State of Maine $150 by doing it myself. If the doctors keep after me about my blood sugar, I will get one of those machines. They used to lecture me about my blood pressure, until I got a home machine, wrote down the readings, and quit taking the pills that were raising my BP.

I too spend hours a day laying down with my eyes closed. I listen to the radio. Fortunately, I live next to Canada, so I can receive CBC Radio One - with no ads (yea!) and no ads from non-profits telling us they still haven't found "the causes of homelessness" (double yea!)

Hi Todd, How does one get a diagnosis of mitochondrial dysfunction? What kind of doctor does that, what kind of tests might they do? Overwhelming fatigue, as in, "I'm too worn out to work anymore today", is my worst complaint. As opposed to overwhelming drowsiness, which I have some days, but not every day. And course, how could I forget the migraines. But the constant fatigue, never feeling rested, is the worst. Your post was very helpful. Thanks for writing it.

Bending over really gets me too, especially when I have to clean the bathrooms at work. I use a broom as little as possible. I prefer old-fashioned style cannister vacuums to those ridiculous clunky uprights all the stores are pushing. Some of the Sears models have a foot-operated quick-release so I can remove the carpet head without bending over. It's a really nice feature. I agree with the other folks here that a 10 year old is plenty old enough to help his poor sick ma keep the house clean. I remember washing dishes when I was so little I had to stand on a stool to reach the sink. He should be able to vacuum, too. I never raised any kids beyond short periods of time, but it seems to me lots of kids want to help, if they are given a chance. I don't remember resenting having to help, although I remember constant fights with my old man (a mean drunk, by the way) over just how full I could let the kitchen trash get before I was in trouble for not emptying it soon enough. Of course, the definition of "full" changed every day...

This is a real interesting thread. I've never thought about blood sugar at all until the PCP told me last week that recent blood tests showed slightly high blood sugar and I'm supposed to get a fasting glucose test. But I have to drive 100 miles round trip to get the test, and I don't have gas money to drive that far. I can barely get up in the morning, even with coffee and a light breakfast, so I don't see how I can go all night without eating, then safely drive more than an hour to get blood drawn. It sounds like most POTS people have low blood sugar - am I reading this right? Or is it more correct to say the glucose levels are bouncing all over the place - like blood pressure and heart rates? I read someplace that stress can raise blood sugar. Since I am always anxious and agitated when at a doctor's office, I'm thinking that could explain above normal readings for me. I have a friend with type 2 diabetes. He's going to bring his sugar meter to band rehearsal tonight, so I haven't eaten since 9:30 AM (it's 12:30 pm now). My stomach is already digesting itself - it's going to be a really looong time until 7 pm!

I tried Provigil once. It didn't help the faitgue, but it did give me insomnia!

I have my own "family" now, one that is not related by blood. It's a few friends that understand when I have to back out of gigs at the last minute. It's hard to find people like that, but they are worth their weight in gold when I do. The worst family member to deal with is my own former partner of seven years, who walked out a week before Christmas last year. When she left, I had no money, little fuel oil, and the electricity was about to be shut off. The Salvation Army bought me some oil, and after six weeks the state sent me a food stamp card. For part of the winter I was dumpster-diving for scrap wood to put in a wood stove, which I borrowed from a neighbor. It was a tough winter. Now she is suing to have our mobile home sold out from under me so she can have all the money. I will probably have to deal with the law suit for years - the courts are as slow as cold molasses. I was really upset when she left, but now I'm glad she's gone. She used to cut out help-wanted ads from the newspaper, even though I was already working as much as I could tolerate, which admittedly wasn't much. She used to tell me it was my fault I was rejected by Social Security Disability, and that I wan't trying hard enough to find a doctor that would actually try to find out what's wrong with me. Now that I have Medicaid, I have a new PCP, but so far she hasn't really done much for me, except to order another round of the usual blood tests, which always indicate there's nothing wrong. She did prescribe propanolol for the migraines, but after 2 days at 1/4 the prescribed dose, I quit taking it due to itching all over so bad I could hardly sleep. I had an appointment to see a neurologist, but that got cancelled, since she has cancer and is starting the "poison-you-to-the-edge-of-death" treatments. I certainly wouldn't expect a doctor to see new patients while suffering that misery. Living alone is tough sometimes, but overall it's easier than dealing with other people. I keep a lot of food in the house, in case a bad headache keeps me in bed for a few days. When I'm too sick to cook, I eat a lot of toast, cheese, yogurt, bananas, and other food that doesn't take much preparation.

I suffered through a "mostly sleepless" study two weeks ago and finally got the results yesterday. I shouldn't have bothered, since they didn't tell me anything I didn't already know. My "diagnosis" is "primary snoring" even though the observation was "occasional to intermittent mild snoring". A diagnosis of non-restorative sleep would have been useful, since that would be medical evidence that I'm sick, and not just a slacker, which of course is what Social Security Disability alleges. I only slept 203 minutes that night, since they made me get up at 6:00 AM, two hours before my normal rising time, even though I was told before the test that I could stay in bed as long as I needed to. I was awake at 6:00, because they were kicking out the other patients, and the noise was disturbing my sleep. I believe they wanted me up for their own convenience, since I was also scheduled for the MSLT - 5 naps, one every two hours, and they wanted to get me out as soon as possible. The electrodes didn't bother me too bad, but the plastic tubing under the nose and across the neck was very uncomfortable. I felt like a turkey all trussed up for the roaster! For the MSLT, I went to sleep 4 out of 5 naps, latency was 4.5 minutes, 7, 10, and 12, but they said that was normal. The study did note poor quality sleep, "mild alpha sleep", increased stage 1, stage 3, and REM, and decreased stage 2, but they didn't tell me what any of that might mean. The recommendations say "strongly encourage continued efforts as exercise and/or weight loss as appropriate - try to acheive 8 hours of sleep per night". But I already exercise as much as I can stand, since my part-time job is very physical, and I don't need to loss any weight, unless I want to be a model (Ha!). Research on the internet reveals that "more exercise - lose weight" is a generic thing that all sleep clinics tell to all patients. Why is it that doctors think they can lecture us into health and well-being? Does it make them feel superior? (Sorry for the rant) I also found the Epworth Sleepiness Scale to be puzzling. It's a simple list of questions "How likely are you to fall asleep" during a variety of activities. The only time I'm likely to fall asleep is if I lay down to do it. But for me, that's the wrong question, because one of my serious problems is feeling drowsy, as in "less than fully alert", not "just about to fall asleep". Many days I feel like I am not fully awake for hours, or maybe the entire day, which I told them. I find it baffling the sleep study did not address this problem beyond how quickly I fall asleep while taking a nap. Anyway, does anyone know what "mild alpha sleep" is, or what the abnormal sleep stage %'s might mean?

"Basically I go through life just scraping by. I don't have energy any more." Boy does that sound familiar. Most of the stuff I used to do, I can't do anymore, or I can just barely do, like holding down a 10 - 15 hour per week church janitor job. It's not enough to pay the bills, so they'll not getting paid. I went to the food stamp office on Dec 16th and applied. The nice lady said the computer won't let them make changes after the middle of the month (I was already in the computer), so I couldn't get food stamps. I guess we don't need to eat after the 15th. Now that it's the third of the month, I need to re-apply? I went to the Houlton ACAP office to apply for welfare heating oil. They said I had to go home and call the Presque Isle office to make an appointment. So I asked the receptionist, "What do you do in this office?" She said, "This is where you come to fill out the applicaton." I'm not kidding. You can't make this stuff up. I applied for disability a few years ago. The Government admitted I have several severe impairments, but they denied my claim anyway. The Reviewing Officer found that I could follow simple instructions at one of our country's plentiful unskilled labor employment opportunities. They also found I could work for six hours a day, even though sometimes I can barely work six hours a week! But facts don't matter to these people, only denying claims. My partner of six years walked out two weeks ago, leaving me with the bill for a modest mobile home we purchased a year ago. I came home from my crummy job to find a Dear John letter: "I'm Leaving! Have a Nice Life!" I owe the UMass hospital a few thousands of dollars for my non-treatment of a few months ago. This place takes the award for Bureaucracy. It's so bureaucratic, not only can I not call the neurologist, I can't call her secretary or even call the secretary's voice mail. All I can do is call some "Neurology Call Center" and leave a message, which is promptly ignored. I filled out some forms begging for charity care, but it did no good, even after I mailed them back. Now their collection agency is sending me letters every other day. Last week their "Office of the President" sent a letter -- asking me for a donation! Have you ever watched "The Suze Orman Show"? She has a segment called "Can You Afford To Buy It?" People call up to ask if they can afford vacations, diamond rings, stuff like that. I sent her an email: "Can I afford to Live?" I'm still waiting for a reply. Sometimes I feel like the Rodney Dangerfield of the medical world. I can't get no respect, diagnosis or treatment... In the US, if you can't work, you can't get health insurance, you can't get medical care, you can't get food or shelter, you can't live. What a country. We're Number One - in ignoring people who most need help.

I used Imitrex for a few years, but I've given up on it. It only helped about half the time. When I have a bad migraine, I'm down for the count for the day anyway, so what's the point of a twenty-dollar pill that I can no longer afford? Even when the Imitrex would work for the head pain, I still felt awful, so no, I can't say that it helped any other symptoms.