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?

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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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Has anyone tested you for calcium levels? For PTH or thyroid levels?

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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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To begin with doctors didn’t suspect gastrology problems because I never complained about the stomach hurting. It was always the chest; shoulder; arms/fingers tingling; dizziness/lightheaded and joint pains. that is why it was cardialogist and neuologist. But after all of their test of heart; MS; brain, etc – my general practitionist said the only thing they hadn’t done was an upper GI scope. And since I did have acid reflux – she thought it would be a good idea. I was told not to eat after 10pm for the morning test. After the test the doctor seemed a little upset because he said I shouldn’t have had anything to eat. I told him I hadn’t had anything to eat since one bite of a bread pretzel at 6:00pm. He was kind of shocked because the food was still in my stomach. So he scheduled me for the emptying study – It showed that after 3 hours 85% of the eggs were still in my stomach. A normal stomach will have almost 100% out in 2 hours. So now I only eat soft foods like pudding; jello; mashed potatoes; clear/cream soups; cream wheat; milk shakes/smoothies. As long as I don’t experiment the pain in shoulder/chest is manageable. But if I go off and eat something a little solid – it will be good for a day and then by the second day I pay for it with all of the symtoms.

I have the same problem with the hip pain. Some days I am fine and feel I could walk for a mile. Other days I can barely get off the couch. I have found sleeping with a body pillow really helps me. As I wrap by body into it and relieves the leg and hip pain. Just wish I knew what the trigger is – as to why some days are better than the other. I am going to a University Doctor tomorrow for the gasterparesis – Hopefully I can get some anwers and what other kind of specialist they think I should be seeing. Because I really believe that my gastroparesis is the result of some unlying cause and not that the gastroparesis is causing all of my sickness.
Take care –

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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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Thank you for your reply. My mom and I didn’t really catch the fact that our calcium levels were all over the place until she made a page with all of our abnormal lab results. She has looked into Hyper/hypoparathyroidism and it’s one of the things she would like to have us tested for. The one time my sister’s pth was tested, it was normal and her calcium level was on the high side, which kind of confused the doctor.

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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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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.

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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.

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

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