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

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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Do you all live together?

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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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@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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45 year old woman: I totally feel your pain in not know what to do for yourself. For the past three plus years I have been to the ER three times; have seen cardilogist; nuerologist; gastrology; thyroid test; all kinds of blood test; spinal taps; MRI of brain; heart; stress test, etc. I also had the low V-D. Not sure who to see now. I have now been diagnoised with Gastroparesis (stomach muscles do not work – so stomach will not empty). But even though I am trying to manage that by changing my diet to liquids and soft foods – I still will get extremely sick. My symtoms also change over time and never know what to expect. When I first became sick – It was lightheadness; fatigue; and just all over weakness. I would drop asleep as soon as I would sit down on the couch. Could not even walk to mail box. Then after a time I started to have the pains in my chest, back shoulder; nauseated; and still the dizziness; I would have a strange taste; extreme thristy; need to urinate every 15/20 minutes; My joints would feel like they were swelled; knees and hips hurt; Went to ER and each time they said it wasn’t my heart – but acid reflux. One thing I never really complained about was stomach pain – so that was one of the last things I was tested for. That is what I was finally diagonised with. But I can’t find any answers as to why the stomach doesn’t work anymore – Is there some underlying cause that is being overlooked. should I be treated for something that will make the stomach work again – It seems if I eat something that does not pass and sits on the stomach – I still have the awful chest pains; deep shoulder pain; arms and finger numbness; lightheaded and nauseated. Most the time it feels like a heart attack. Last year I had a real bad case of Ramsay Hunt (Shingles of the head/ears). So I am looking into if this may have been a unlying cause. I also have been looking into Candida Overgrowth. You might want to check out this website – If there is anything to it – sounds like it could be a reason for a lot of unknown illnesses. http://www.candidasymptoms.net/#candida_symptoms Good luck in discovering your best treatments and diagnosis. Hope you find some help within this forum.

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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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@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 your reply. Umm. That is uncanny. You’re describing my sister and me somewhat, and my mom to a tee except for her loss of pain sensation (which came back after 5 years), right down to the ears. My sis and I had chickenpox twice when we were 3-5 years old, and my mom thinks herpes zoster is a possibility. From what I’ve read about Candida, the only way it’s really harmful and not just irritating is if it’s in the bloodstream or if the host is immunocompromised. Do you mind if I ask why doctors suspected gastroparesis in you, considering you describe symptoms that aren’t attributed to it? I went and read about it on a few websites, and it doesn’t sound like something we have…? We have been tested for H Pylori, thyroid problems, Lyme Disease, Sjogren’s, and have had MRIs, abdominal CT scans and my sis and I have had a pregnancy test every time we’ve gone to the ER, despite the fact that we tell them we have no boyfriends and have been sick for several years now. My mom used to take antacid almost daily, mostly when she went to bed, and when her joint pain started, her heartburn went COMPLETELY away at the same time! She used to be unable to eat anything for several hours before she went to bed and now she could eat a chilidog in bed then roll over and go to sleep without getting heartburn.

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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 your reply. The cats have HAD parasites and were treated for them. The research I’ve done suggests that we could have a parasite. We had our house assesed for mold and it was determined that we have none. One of my aunts has several of our symptoms but has attributed them (in herself) to her age and weight. We don’t really believe in alternative medicine, though we may consider it if we keep getting nowhere with conventional doctors.

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@ambermartin

Do you all live together?

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I guess I didn’t post this directly as a reply to your response the first time. We did live together 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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@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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One of our chief complaints at the moment is hip pain that is so bad it’s hard to get up from a sitting position. My mom can’t sleep for more than a few hours at a time, because the hip on whichever side she is sleeping on gets sore and wakes her up, then stays sore for several hours.

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@ambermartin

Do you all live together?

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I know it is hard to find a doctor sometimes. It took me years to find one for a problem I had, but my experience was that once I was willing to pay out of pocket for something then any doctor was willing to help. Don’t give up on your parasite idea. It sounds like its a good idea and probably easy to treat if you can ever begin treatment.

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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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@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 hyperparathyroidism?

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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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