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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So sorry for all of your trials and tribulations. I became ill in 1981, thirty years now. After all the problems similar to yours, this is how I am doing. I am hypothyroid, After two surgeries to remove most of the thyroid gland, a small portion of the gland that was left started growing more tumors. I had digestive disorders, i.e., pain under the left rib cage, diverticulitis, diarrhea, horrible stomadh aches, joint pain, my skin itched horribly, unbearable fatigue and on and on. A pharmacist told me that I should look into an allergic reaction to the cellulose in my thyroid medication. Low and behold, after talking to the pharmaceutical companies, i found out that most of the thyroid medication has “acacia” sometimes called “gum arabic” in the pills that hold tham together. Years ago I was tested for allergies. The item I was the MOST allergic to was “acacia”. This is never listed in the contents of any medication. I am now on a medication called Westhroid(made by RLC labs.). As soon as I quit taking levothyroxine (a chemical) with acacia in it and went to the natural pork thyroid medication that has both T3 and T4 in it, my other complaints have subsided or begun to subside. No more indigestion, diarrhea, pain under the left rib, fatigue is getting better, my skin is healing, inflammation is rapidly leaving my body and on and on. I am finally getting better. You could have multi-chemical reactions to medications and food. Jelly beans, chewing gum, and many other foods have acacia in them. Read labels and eat fresh food. Cook from scratch. Incidentally, I was diagnosed with CFIDS; IT WAS THYROID. Look up STTP (Stop the Thyroid Madness) on the web. This may be of benefit to you. Best of luck.

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This is just a shot in the dark, but I suffer a multitude of problems after eating ANY food that contains a dairy product. It has reached the point where just butter on one piece of toast starts it all. It couldn’t hurt to avoid milk, cheese, butter, etc., for a couple weeks to see if this helps. I use lactose-free milk, which seems to be all right. Last week I had “real” mashed potatoes at a buffet lunch. Sure enough, the miseries set in about 20 minutes later. I just didn’t think about the fact that they probably used milk in the mashed potatoes.

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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 have been going to Mayo Mn since 1998 and for 90% of the time I have been on either medicaid or medicare (medicaid you can get if you are disabled and are not eligible for Medicare yet). I live in Wisconsin. As a matter of fact when I first started to go to Mayo I was on state aid health. And what you can do is if you have a general practitioner go him or her and ask for a referral. If they cannot figure who to send you to have them refer you to a internal specialist and go from there. Also you do not need a full diagnosis all you need is a physician to say you are unable to work due to your undetermined illnesses. There are ways to work around it you just have to not give up and be your own voice and not to be rude but stop having your mom call for you. You need to be your own medical advocate.

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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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a TSH level is in a Complete Metabolic lab test. TSH indicates how your thyroid is working.

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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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Thank you for responding. My sister and I stayed sick—got worse, actually—after we went away to college, so if it’s something environmental, it must be a parasite or something that would stay with us after we left the environment.

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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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Thank you for responding. My sister and I stayed sick—-got worse, actually—-after we went away to college, so if it’s something environmental, it must be a parasite or something that would stay with us after we left the environment.

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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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We’ve all tested negative for Lyme Disease. Are there other tick-related illnesses that can cause serious illness?

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.

Jump to this post

Thank you. We’ve had TSH levels tested. They’re always normal, except my sister had an abnormally high 3rd generation thyroid test earlier this year at a health fair. She went to an endocrinologist and had it rechecked and it was normal again. The endo. told her the health fair probably mishandled her blood sample. Does anyone know if it’s possible to have a thyroid problem with tests that are sometimes normal?

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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 called and was told that, in order to get their charity care, our doctor here would have to tell a Mayo doctor that we are not able to get the care we need here, and exp[lain why. Needless to say, our doctors here are not willing to do that, even the one who suggested that we go to the Mayo!

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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!!

Jump to this post

Thank you. I did apply for SSI and am waiting to hear about that. Unfortunately, Missouri Medicaid requires a disability diagnosis, not just a doctor’s note.

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@medicalrecordorganizer

This is just a shot in the dark, but I suffer a multitude of problems after eating ANY food that contains a dairy product. It has reached the point where just butter on one piece of toast starts it all. It couldn’t hurt to avoid milk, cheese, butter, etc., for a couple weeks to see if this helps. I use lactose-free milk, which seems to be all right. Last week I had “real” mashed potatoes at a buffet lunch. Sure enough, the miseries set in about 20 minutes later. I just didn’t think about the fact that they probably used milk in the mashed potatoes.

Jump to this post

Thank you. We’ve tried dietary solutions, like going gluten-free thinking we might have Celiac, and dairy-free, and vegan. Though we lost a bit of weight, the symptoms remained.

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