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?

Liked by janasr

@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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Check out this web page and all the pages on this site: http://parathyroid.com/diagnosis.htm

Hyperparathyroidism is a nasty, nasty disease, but it was such a relief to get an affirmative diagnosis that I could do something about. I did have surgery and am now recovering.

REPLY

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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@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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does mayo take medicare, i live in tennessee, and when im refered and they get my records how long does it take for them to see you……

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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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Yes they do–I am on it, but I think medicare pays 80%–give them a month notice if u can! You would prob go to Jacksonville?? They might see you in less time, I always call MN a month out to make sure I dont waste my time going up there.

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@fraukt2

We did when we got sick. (And my mom does cat rescues…you’d think we could find a dr. willing to test us for parasites, but no.) My sister and I each got sick a few months into our senior year in HS then left for college the following summer and stayed sick while we were in school. My seizures began a year after I left home.

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Wandered in here and read your issues. A couple of things to look into: cat scratch fever (had it myself when I was a kid from wild kittens – generally not serious but complications can arise that are) and tick bites (can pass on multiple, serious illnesses).

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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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Vitamin D low and a host of your problems CFIDS I had many of these problems. www,cfids.com many think it is being tired,not the case.Please check these sites .I have severall virus also my mom had cfids at a time when nothing was known looking back I have fought it for years,always thought had bladder infection,fever chills,smells were so strong,trouble with mind,stomach problems. could go on and on Pain is awful,hips legs
top feet.in beginning my chest would hurt ,it is better.. I bet you all have low blood pressure.after 10 years my sweats have gone . If you can be checked for epstein-barr,cytromagloviris, Dr will tell you everyone has ebv in body have them check your titers insist. the pain of fire by ribcage could have been shingles…HHV 3 mAYBE A RHUMATOLOGIST can best help. I went month after month with dr saying I was depressed,my reply was I didnt think depression caaused chills fever and I had weight gain.when illness first hit I lost tons of weight..I would get lost going to work,awful and so tired I sleep on lunch hour finally my doctor looked at me and said something is wrong and he called specialists. I wish you best of luck God bless

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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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Thank you for responding. Yeah, I don’t have insurance. My mom called and was told we’d have to bring $3k to an appointment and pay for tests as we go; can’t afford it.

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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 spoke with a gentleman at the Mayo Clinic in Minn. and he told me that no one is ever turned away because they can’t pay. give em a call, good luck, and god bless.

Liked by huffman1835

REPLY
@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 believe they take Medicare partB, I dont know how long it takes to get an appointment.

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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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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.

REPLY
@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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