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.

"Bed Pews" -- I love it! Personally, I'd rather have a recliner. Or how about a recliner with wheels? Could it work for mopping floors?

One of the first things I tell every new doctor is that I have gut problems. *Not one* of them has shown the slightest interest, asked any questions whatsoever, diagnosed the problem (even incorrectly!), or prescribed any treatment. What's wrong with these people? Is the subject just too 'icky'?? Except for my chiropracter. She does some kind of 'adjustment' (don't know if it helps) and told me to eat yogurt every day (and some kind of herbal stuff that didn't do anything). The yogurt definitely helps. There's also a long and growing list of stuff I can't eat anymore, including almost everything I used to eat (bummer).

As recently as 1999 I actually had a 'regular' health insurance plan that cost about $400 /quarter, even as an independent contractor. Then almost all the insurance carriers left the state and I ended up with a useless $5000 deductible plan from Anthem that cost the same as my previous plan. Then I started having some health problems and I had to chose between paying the doctor/pharmacy or the useless insurance. I've heard that in Maine the vast majority of high-deductible planholders never file a claim (and don't get much healthcare, either). At this point I think folks without much assets are probably better off with no insurance than with inadequate insurance. My partner has Medicare, and she spends a huge part of her monthly income to pay the 20% Medicare doesn't. Fortunately Maine has pretty good laws to keep creditors from taking everything but the shirt on your back. For instance, if you have a modest home without a mortgage (as I do), it's probably safe. Creditors can't take tools you need to make a living, and stuff like that.

One of the few positives of my parttime custodial job is that it forces me to get some excersize. Good luck, I hope you don't get bored to death.

You can order the test from this website: http://www.proteabiopharma.com/page/freque...ed-question.php I sent them an email to find out if they ship to the US and they replied that they do.

Hi all, Medicaid and other programs don't care about legal relationships or lack thereof. They just want to know what the household income and assets are. They are specifically designed this way because even bureaucrats know that some people live together without a license to avoid being liable for each other's financial troubles. jump, I think you are correct that I am beating a dead horse trying to get help in Mass. I picked UMass in Worcester because I have friends who just moved from Maine to Mass ('cause there's so little work here) and because it's relatively easy for me to get there by bus. I have been thinking about the Dartmouth/Hitchcock hospital. When I was young I used to go backpacking in the White Mountains every weekend. Travel from here to northern NH is difficult; the only road is that horrible two-lane US 2 or drive all the way to Portland and then turn west. It's a bit off-topic, but I have driven across huge expanses of the US where one sees nothing but empty landscapes and tiny towns that are very far apart. I guess they must have the same trouble getting medical care. I can see now that I should have started with the social worker before making an appointment. I thought it was strange that I could get an appointment with a neuro at UMass on a week's notice with no doctor referal or any of that preliminary stuff. I looked at the Mass 'Health Safety Net' website. They will cover homeless residents and undocumented residents (thank God for that!), but non-residents need not apply. A search on the UMass Medical Center website turned up an interesting newspaper article on how hospitals have cut their charity care expense in half since the new insurance regime took effect. Care to guess where that money is now going?

Thanks to all for your kind words and suggestions. No we're not married, we're registered as domestic partners (it's a Maine thing). For Medicaid in Maine (and for most other programs) I have to report household income. As meager as Social Security is, it is *still* over the threshold to get help from the state, although we did get one Food Stamp card for $20 - *that* sure bought a lot of groceries! I took the job as church custodian because I can set my own hours. I can't work a job with regular hours because I'd be calling in sick all the time. I don't really like the job, but it does force me to get exercise so that I don't become deconditioned. The suggestion to find a desk job is ironic - I used to earn a living as a computer programmer until I got too sick to do that kind of work on a regular basis. I still have a client that would like me to do more work when I'm able. My illness (whatever it is) affects my concentration and especially my short term memory during the migraine attacks. No concentration - no work gets done. Calling the hospital social worker - yes, I will do that. Will they act as a case manager, someone to coordinate my schedule and deal with the horrible bureaucracy at these large institutions? I can't even figure out how to get the neurologist's secretary to call me back so I can get her to return my records. I brought all my medical records with me, but had to leave them so they could copy them. The secretary was supposed to mail them back to me, but she only sent back a portion of them. To contact her, I have to call some useless 'neurology call center' and dictate a message to the operator, which then gets ignored. They won't even patch me to the secretary's voice mail. Yes, SSDI / Medicare would be a huge help. After a bunch of phone calls and letters, Social Security sent me a CD of my disability claim file. I took it to a local disability lawyer. Even the lawyer turned me down. I guess in the USA, if you have two legs, two arms, and two eyes, you can work. I do have some geographical challenges. I live in a town so small, there's no post office or police department. The nearest town of 30,000 (Bangor) is 135 miles from here. But don't even think about suggesting I move. I'll never leave my farm, except in a pine box! Jim

I describe it as waking up with a hangover every day. I never feel rested. On a good day my head hurts. On a bad day it's a migraine attack that keeps me on the couch most or all of the day. My gut doesn't usually bother me until I've been up for a while. I don't usually have any specific body aches; I just feel lousy to terrible, like I haven't really slept. I don't have a proper diagnosis yet, but I have lots of documentation of crazy blood pressure and heart rate readings.

After being sick, off and on, for about six years I'm still trying to get a proper diagnosis. But my illness has left me as poor as the church mouse where I work part time as a custodian. My retirement and savings are long gone, and of course the church doesn't offer insurance, which I couldn't afford in any case. My partner's Social Security is too high for me to get Medicaid, and I've given up on Social Security Disability after losing several appeals. I'm sick of begging for charity care from every doctor and hospital I go to - why do they always treat us like a bunch of lazy slackers? Right now I'm trying to get a diagnosis from the UMass Medical School hospital in Worcester Mass, but I live in northern Maine, about 400 miles away. I've seen a neurologist once; she seems to believe there's something wrong besides "you need Therapy and another SSRI". I was supposed to be there today but I cancelled the trip at the last minute. On Monday, the day before I was supposed to leave for Mass, somebody from the imaging place called and informed me I needed to make 'payment arrangements' with the billing department before they could take any pictures. Nice to call at the last minute; the appointment was set up two weeks ago. I told them right from the start, over and over again, that I don't have any money, but I guess it just doesn't sink in. Now that Mass. has their mandatory insurance deal, the hospitals are pretending their charity programs are gone. It's pretty clear they don't want poor people from out of state. Two years ago I tried some specialist in Bangor Maine but all she told me was, "Yup, you're always tired and you have migraine attacks. Come back in three months and we'll see if you're still sick. Pain pills are evil, so no more pain pills for your migraines. And go talk to this therapist". There must be a bunch of people on this board in the same situation. Have you managed to get proper care? How and where? Thanks, Jim Littleton Maine

I use 'Natures Bounty' Sublingual liguid B Complex from Rite Aid. It's cheap and effective. There is research that suggests that it is as effective as injections for most folks who can't properly absorb the pills. Two years ago my partner suggested the B12 test and it showed a deficiency, which is unusual in the USA. I asked the doc what was causing the deficiency and he replied, "I don't know" and that was the end of the discussion. Don't these people have any curiosity? I did some research and found that H. Pylori (the bacteria that causes stomach ulcers) can cause B12 deficiency. So I asked for the test, and it came back positive. The doctor said, "Half the population of the world has this, you don't need treatment." But I had symptoms, like waking up at night all hot and sweaty, etc., so I insisted, and he prescribed a name-brand treatment that cost $400! The pharmacist (bless her) came up with a generic substitute that cost about $15, and after the doctor approved, I fired him. B-12 Deficiency is bad news; it can cause a wide array of problems.