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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@tmnm

Depending on what state you live in, you may have state aid for HC coverage. If you want to find out, go to Healthcare.gov. It couldn’t be more simple. Fill out the form to find out what is available in your area, and what it will cost according to your income. If you don’t have an income there are options.
Mayo takes almost all programs & is excellent at diagnostic medicine.
Start by requesting a physical due to random health issues & accute problems.
Have your previous tests transfered electronically.
Save your discussion for the Dr.s office.visit, If you try to determine what kind of a Dr. you need while making the apt. you may sabotage your own diagnosis. Leave that to the experts.
Keep being proactive & persistent and you will resolve this.

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Thanks for your reply.

Medicare is the medical plan for senior citizens and disabled people. Medicaid is for low-income people of all ages who qualify, and the requirements for eligibility in my state are income plus one of a variety of things like being age 65+, having a recognized disability, pregnancy, etc. We meet the income guideline, but not the other requirement.

The procedure for filing a lawsuit for SSI (SSI is Social Security Disability—you can’t get regular SS until you’re old enough to qualify) is that you have to apply for SSI and be turned down first, and you have to be diagnosed with a recognized disability before you apply. Our hands are tied, because we can’t get a diagnosis. Caseworkers don’t have anything to do with whether or not you qualify for Medicaid. Even if they do their jobs properly, which most of them do, if you don’t qualify you don’t qualify.

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@atisdale

There is a book called “Your Symptoms Are Real: What to Do When Your Doctor Says Nothing Is Wrong” by Benjamin H. Natelson. This might be helpful for you. You might also be on your own as far as a diagnosis. My advice is to pay attention to your body and write down as much as you can. I spent about 5 years going to doctors and alternative practitioners to try to find a diagnosis. I am the one who finally diagnosed myself with POTS (an autonomic nervous system disorder). I went to my family doctor and a cardiologist who confirmed the POTS diagnosis, but I am the one who initially suggested it. I spent hours scouring the web and looking at other people’s blogs to see if my symptoms matched theirs. One person with POTS said on her blog that she always felt terrible after taking a hot shower. I have the same thing and that is what finally lead me to a diagnosis.

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Yeah, my mom has a pretty good idea what we have, and the tests would be pretty basic and definitive, but we can’t get a doctor to order them, even when she takes a printout from the informational website to an appointment and shows them that we have 90% of the symptoms and that they presented the way they would with that illness. I wish we lived in a country that gave a **** about its poor people.

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@powerofpositive

It may be a good idea to obtain all of your medical records, including any testing /labs done. Review them your self. Is there a common thread? Doctors can miss the connection, especially when you move from one to another. Maybe staying with one internest/pcp for awhile and work together,then if you feel this isn’t progressing, move on to another. Sometimes labs show up negative and if repeated are infact positive….know this happens with autoimmune diorders. Try not to get discouraged, and being your own advocate may help unravel what is going on.
Are you on medication for the seizures?
Hope you find some anwsers.

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Lupus, H. Pylori and HIV were ruled out. I don’t know how much of this test stuff you or other readers will be familiar with, but I’ll tell you about some of them.

A neurologist told me I have epilepsy, but he didn’t even do an EEG or consider my other symptoms…he diagnosed that after my 5th trip to the ER with a seizure. Another problem is that our lab results vary immensely. For example, early in this process (before we started gathering and watching our records and before I started having seizures), I had the following test results (and nearly the same results 2 weeks later in a follow-up, so we know the first results weren’t a mistake) and the doctor didn’t say anything at all to my mom about them OR do any further testing other than the redo: WBC 2.9 ; RBC 3.88 ; HGB 11.6 ; HCT 33.2% ; Granulocyte 1.0 ; calcium 10.8 ; creatinine .4 ; SED rate 31. When I went to a doctor again 6 months later, the WBC was still low and calcium was 8.2, but the others were normal and my liver enzymes were through the roof, reactive lymph was 10%, and my urine tests showed zero bacteria but >50 RBC, and again, the doctor said his office would call if there was a problem with the results, but they didn’t.

All 3 of us have had very high 3rd generation thyroid tests—in fact one doctor insisted that my sister start taking thyroid medication without redoing the test, but my mom had seen the same results in herself and in me go back to normal when they were redone a couple of weeks later, so she took my sister to another doctor and had the test redone (they WILL test for basic stuff like thyroid) and it was normal.

How many illnesses are out there that can cause liver enzymes and thyroid to go haywire and then back to normal within a couple of weeks???

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@tmnm

Depending on what state you live in, you may have state aid for HC coverage. If you want to find out, go to Healthcare.gov. It couldn’t be more simple. Fill out the form to find out what is available in your area, and what it will cost according to your income. If you don’t have an income there are options.
Mayo takes almost all programs & is excellent at diagnostic medicine.
Start by requesting a physical due to random health issues & accute problems.
Have your previous tests transfered electronically.
Save your discussion for the Dr.s office.visit, If you try to determine what kind of a Dr. you need while making the apt. you may sabotage your own diagnosis. Leave that to the experts.
Keep being proactive & persistent and you will resolve this.

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I know, right? Obama sold us out when he threw mandatory insurance into it instead of just making it universal health care—no insurance and no cost.

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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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I didn’t realize that my mom and I had high thyroid tests a few years ago, too, that went back to normal a couple of weeks later. Maybe thyroid tests are affected by the way the blood is handled and it’s mishandled a lot? I think it’s weird that we would all have high results then back to normal so quickly.

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@tmnm

Depending on what state you live in, you may have state aid for HC coverage. If you want to find out, go to Healthcare.gov. It couldn’t be more simple. Fill out the form to find out what is available in your area, and what it will cost according to your income. If you don’t have an income there are options.
Mayo takes almost all programs & is excellent at diagnostic medicine.
Start by requesting a physical due to random health issues & accute problems.
Have your previous tests transfered electronically.
Save your discussion for the Dr.s office.visit, If you try to determine what kind of a Dr. you need while making the apt. you may sabotage your own diagnosis. Leave that to the experts.
Keep being proactive & persistent and you will resolve this.

Jump to this post

My roommate just gave me yesterday’s mail and I got a letter from DFS saying that I was turned down for Medicaid (I applied again after the ER neurologist diagnosed me with epilepsy), because they requested my records from the hospital where I went to the ER, and the hospital never sent them! They had 6 weeks to send them, and they just never bothered. AUGH!

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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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Also, there is nothing in my mom’s house that produces carbon monoxide. Her heater and all her appliances are electric.

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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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Have you done any research on Lyme disease?

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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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Yes. And we have all been tested—PCR, western blot, etc. All negative. Thank you for your response.

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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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Hi fraukt2, I need help to solve my itching problem, can you help/suggest me?

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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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how get reply/response for my query

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@powerofpositive

It may be a good idea to obtain all of your medical records, including any testing /labs done. Review them your self. Is there a common thread? Doctors can miss the connection, especially when you move from one to another. Maybe staying with one internest/pcp for awhile and work together,then if you feel this isn’t progressing, move on to another. Sometimes labs show up negative and if repeated are infact positive….know this happens with autoimmune diorders. Try not to get discouraged, and being your own advocate may help unravel what is going on.
Are you on medication for the seizures?
Hope you find some anwsers.

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Check for Lyme. Go to Lymenet.org and you need to go to their flash discussion and ask for a LLMD near you. They are the only ones that have any knowledge of Lyme in later stages.
I was un/then misdiagnosed for 40 years then dismissed and mistreated until I figured. Also Econolabs.com is an inexpensive place where you can order your own testing and you pay them online and then go to a participating lab close to you and they draw blood or whatever you need. To test for Lyme order a Western Blot test. For that call the lab you will visit and make sure they have the kit. Quest lab (I Think) is the best lab to have it sent to if possible.
Good Luck and I will pray for you,
CJ

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