Don't know what kind of specialist to see

Posted by fraukt2 @fraukt2, Jul 17, 2011

My sister and I have been sick for 3 (me) and 4 (her) years and have not gotten a diagnosis. We are having symptoms from several different systems (neuro, gastro, cardio, etc.) and don’t know what to do. We have seen neurologists (I have seizures; my sister doesn’t), an internist, an endocrinologist and several family doctors, and they all tell us to go somewhere like the Mayo, but they are widely varied in their opinion of what kind of specialist we should see. We have no insurance, but we can pay cash up to a point. We just can’t keep going to different kinds of doctors without some kind of clue as to what we’re doing. ANY SUGGESTIONS?

@huffman1835

Hey girl…sorry ur sick. Im waiting on a transplant, but just wanted to tell you, if u can afford/or get ins, I highly recommend Mayo Clinic! The first thing they do is 20-30 tubes of lab & urine to see what is right, what is wrong and they can even tell you what you had and when. It is a very organized medical facility and it doesnt take months to see diff specialists. Best I can tell you is go to the closest one…AZ, FL or MN. They saved my life!!

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Did he work in the billing office? When my mom called to try and get an appointment, they first asked if we had insurance. When she said no, they told her we would have to BRING $3,000 WITH US to PAY UP FRONT.

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@terri

Well, you can check out this article: http://www.nytimes.com/2011/02/03/health/research/03disease.html. I first read about this organization in the AARP magazine. There is a sobering statistic that 30% of all deaths coming into emergency room were caused by undiagnosed diseases.

I had two serious diseases that went undiagnosed for years. One was Graves disease, which I had in the 1980’s, and the second was hyperparathyroidism, which was diagnosed this year. Both times I knew there was something terribly wrong with me, but I couldn’t get any doctor to believe me. Before I was diagnosed in either case, I went to several doctors who dismissed my symptoms as being from an easily explained source: stress, bad lifestyle, and later–menopause or too much caffeine.

The only way I finally received a proper diagnosis was to keep changing doctors until one did the right test. That was all it took. If they don’t do the right test, you’re out of luck.. This seems to happen in a lot of cases. And for people like you who have no health insurance, to not get the right diagnosis the first time means you’re out of money and you have no cure. That’s just not fair.

I happen to be a public school teacher. Right now, the heat is on for teachers and their students to meet high standards or they lose their jobs and they fail. It seems to me a lot of doctors are failing to diagnose a lot of us early enough to save us from the dire consequences of having any number of body destroying diseases. The information is out there for them to do the right diagnosing, but they are not using it. Is it incompetence or is the medical profession becoming so overtaxed that doctors can’t do a thorough job? Whatever–you shouldn’t have to pay until you get the right diagnosis. This is why I’m all for health care reform.

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“Before I was diagnosed in either case, I went to several doctors who dismissed my symptoms as being from an easily explained source: stress, bad lifestyle, and later—menopause or too much caffeine.”

Oh my gods, this is happening to me, right now. I am currently trying to get treatment and a concrete diagnosis from doctors who, frankly, do not care about their patients. I was even threatened with being sent to a mental health clinic, just before a blood test (which I had been requesting for monthS) finally came back positive for a condition that I suspected – vitamin D deficiency. I became sick, again, and well.. you can read my profile lol.

I waited an additional *8 weeks* for today’s appointment, only to be told after waiting half an hour in the examination room that my doctor wasn’t even coming in! I had to talk to so many people, just to get the follow-up blood test I was Supposed to get, today.

My cat gets better treatment at the vet. I actually asked the vet, once, if they could pretend I was a cat, but they said they would lose their license if they treated a human.

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@terri

Well, you can check out this article: http://www.nytimes.com/2011/02/03/health/research/03disease.html. I first read about this organization in the AARP magazine. There is a sobering statistic that 30% of all deaths coming into emergency room were caused by undiagnosed diseases.

I had two serious diseases that went undiagnosed for years. One was Graves disease, which I had in the 1980’s, and the second was hyperparathyroidism, which was diagnosed this year. Both times I knew there was something terribly wrong with me, but I couldn’t get any doctor to believe me. Before I was diagnosed in either case, I went to several doctors who dismissed my symptoms as being from an easily explained source: stress, bad lifestyle, and later–menopause or too much caffeine.

The only way I finally received a proper diagnosis was to keep changing doctors until one did the right test. That was all it took. If they don’t do the right test, you’re out of luck.. This seems to happen in a lot of cases. And for people like you who have no health insurance, to not get the right diagnosis the first time means you’re out of money and you have no cure. That’s just not fair.

I happen to be a public school teacher. Right now, the heat is on for teachers and their students to meet high standards or they lose their jobs and they fail. It seems to me a lot of doctors are failing to diagnose a lot of us early enough to save us from the dire consequences of having any number of body destroying diseases. The information is out there for them to do the right diagnosing, but they are not using it. Is it incompetence or is the medical profession becoming so overtaxed that doctors can’t do a thorough job? Whatever–you shouldn’t have to pay until you get the right diagnosis. This is why I’m all for health care reform.

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My mom and sister have a Vitamin D deficiency, but their B12 is fine. I have a severe B12 deficiency, but my D is fine. Was your follow-up test something to determine what’s causing your D deficiency? It takes up to a year to build Vitamin D back up to an appropriate level.

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@huffman1835

Hey girl…sorry ur sick. Im waiting on a transplant, but just wanted to tell you, if u can afford/or get ins, I highly recommend Mayo Clinic! The first thing they do is 20-30 tubes of lab & urine to see what is right, what is wrong and they can even tell you what you had and when. It is a very organized medical facility and it doesnt take months to see diff specialists. Best I can tell you is go to the closest one…AZ, FL or MN. They saved my life!!

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I went on the Mayo clinics web site, the Minn. branch, and it was written, that no one is ever turned away because of the inability to pay, I also called the Arizona branch, and she told me that they don’t take my insurance, but the Minn. branch does….go figure. My advise to you would be to go on the Mayo Clinics web site, and see if they even specialize in what your illness is, and if they do, make aqn appointment with the Minn. branch, and go fgrom there. as far as medical insurance is concerned, you should be able to get on some kind of medical plan, weather its medicare, medicaid or whatever, depending on where you live, again you need to research your options.

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@huffman1835

Hey girl…sorry ur sick. Im waiting on a transplant, but just wanted to tell you, if u can afford/or get ins, I highly recommend Mayo Clinic! The first thing they do is 20-30 tubes of lab & urine to see what is right, what is wrong and they can even tell you what you had and when. It is a very organized medical facility and it doesnt take months to see diff specialists. Best I can tell you is go to the closest one…AZ, FL or MN. They saved my life!!

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Hi.
Based on what I see on the website, it sounds to me like they will work with people who have already been seen (probably in the ER) and can’t pay the bill, rather than accepting patients who want an appointment with one of the doctors, as they told my mom. We have already researched our insurance options. We don’t qualify for Medicaid (have to have kids or be under 18) and the Mayo doesn’t take Medicaid from out of state, anyway (We live in Missouri), and you can get Medicare only if you’ve been on SSI for 2 years, unless you’re a senior citizen; to get on SSI, you have to have a diagnosis, which we don’t.

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over medicated.My Mom and Dad where having problems like yours.Stop taking everything you get,look these drugs up and tell your Doctor How they are working for you. If they are not working Stop taking them. Over medicated.Think about it!

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@stinkbutt

over medicated.My Mom and Dad where having problems like yours.Stop taking everything you get,look these drugs up and tell your Doctor How they are working for you. If they are not working Stop taking them. Over medicated.Think about it!

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It could be more dangerous to just stop taking all your medication. Please do look at this as a possibility and review with your doctor but don’t just stop taking all your meds.

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@huffman1835

Hey girl…sorry ur sick. Im waiting on a transplant, but just wanted to tell you, if u can afford/or get ins, I highly recommend Mayo Clinic! The first thing they do is 20-30 tubes of lab & urine to see what is right, what is wrong and they can even tell you what you had and when. It is a very organized medical facility and it doesnt take months to see diff specialists. Best I can tell you is go to the closest one…AZ, FL or MN. They saved my life!!

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Mayo Clinic Social Serivces may be able to give you some advise and or offer a solution to your financial situation, call them at (507)-284-2131

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@huffman1835

Hey girl…sorry ur sick. Im waiting on a transplant, but just wanted to tell you, if u can afford/or get ins, I highly recommend Mayo Clinic! The first thing they do is 20-30 tubes of lab & urine to see what is right, what is wrong and they can even tell you what you had and when. It is a very organized medical facility and it doesnt take months to see diff specialists. Best I can tell you is go to the closest one…AZ, FL or MN. They saved my life!!

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Call a Financial Representative at Mayo Clinic. If you are considering Rochester then call (507)-266-7075, they should be able to answer this.

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@larrybuckp

I would suggest talking to any Vet who may have handled the cats. Maybe they tested them for parasites. You should do research on cat parasites and their symptoms in humans. Check for family traits, and look for mold in the house. There may be a clue somewhere, and they are easy to overlook. I have not been impressed with infectious disease doctors who have seen me, but they can’t seem to handle anything exotic or unusual. If you could see a doctor in alternative medicine, or integrative medicine, they are trained to look at the patient rather than the disease. I have heard of them working with Mayo and getting good results. Good luck.

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This does sound like a credible theory, and just a stab in the dark from me. A collegue I worked with had an unusual allergy to a chemical in plastic and it took a fair few doctors to diagnose and he did move house a couple of times thinking it was something there since he was better when away from home. If all 3 of you have problems I wouldn’t think it was an alergy. Although something elso to consider though, do you still have the same trouble when you live away from home for a while? If you do its something in your house, and that would be a start.

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@fraukt2

Maybe I should have put symptoms? I DON’T KNOW HOW THIS WORKS! I hate to mention that our mom is sick, too, because one dr. said he thought my sister and I might have something hereditary, but it would be odd if it were hereditary when our mom had gotten sick only 5 years before us—he would expect her to have been sick since her teens like we were. And her symptoms began with a complete loss of pain sensation, which neither of us has had.

Some symptoms: started out with fatigue, change in sense of smell and taste, episodes of lower abdominal pain, back pain and pain under the bottom of my ribcage on left side—felt like I was wearing a belt of fire. Every 3-6 months, a cluster of new symptoms would begin, and some have been permanent but others have gone away: memory problems (specifically forgetting words in mid-sentence and forgetting how to do things that I had just learned for my job), balance problems, off-again-on-again urinary symptoms with no infection, dark streaks under fingernails, sleeping longer and difficult to wake, night sweats, photophobia and phonophobia, (I was given Ativan in an ER and it made me “see” sounds—very freaky) joint pain esp hips and shoulders that started immediately after a bout with the flu (?) and ended just as suddenly a year later after another bout with the flu (or flu-like illness) then restarted a few weeks later, weakness in hands making grasping difficult, globs of fat in poo, green urine, then my seizures started after 1 1/2 years. They stopped for a while when I was taking Lamictal (but I had almost constant stomach pain on it so I quit taking it), then restarted and now last up to a half hour. Test results seem to vary from one to another. One constant is low (like 4) Vitamin D and a calcium reading that fluctuates from 8.1-10.6

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You know what else too, this all rings the bell for ‘inconsistant or low level carbon monoxide poisoning” There is a fair few symptoms that match up. Another avenue to consider but perhaps get your local fire service to examine your house. They have much more sensative equipment than a regular CO2 detector. This was the most interesting link I found on Low level CO2 Poisoning…
http://www.carbon-monoxide-survivor.com/carbon-monoxide-poisoning-symptoms-multiple-exposures.html

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I’ve posted a few responces throughout this thread, and I hope they help you in your quest for a diagnosis, please feel free to email me if you need pointing in the right direction as far as dealing with the Mayo Clinic. Best of Luck

Chris

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