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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@stinkbutt

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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My mom and sister don’t take medications, other than the occasional Motrin or Tums. I started taking an anti-seizure medication in July, but before that I didn’t take any meds for the prior year, either.

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I had blood work done a few weeks ago and discovered that I have a major B1 and B12 deficiency. My mom and sister have a HIGH level of B12 (normal is 211-911; mine is162 and theirs were both over 950), but their D2 and D3 levels are very low, whereas my D levels are normal. Also, my white blood cell count is 3.16 (normal is 4.0-12.0). This was a new doctor, and she freaked me out by telling me that there were “lupus cells” in my blood. I told my mom this, and she said she didn’t think there is any such thing as lupus cells, and that I should call the doctor and ask her to clarify, which I did. What she meant was that I have a positive ANA! Well, the titer was only1:80, which some labs don’t even consider positive, which is why my sister is sometimes told hers is positive and sometimes negative. The fluorescence pattern wasn’t identified, so I don’t know why the doctor even mentioned the possibility of lupus to me, let alone making me think for a week that I HAVE lupus.

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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 haven’t asked my mom to do any calling. I have had a lot of trouble with confusion for the past few months, and I can’t seem to communicate my concerns with doctors without help. My mom lives 3 hours away (and is also sick, so some of the calling she has done on her own behalf as well as mine), so when I go to the ER, my roommate usually takes me and talks to the doctors, as I am too out of it to deal with them.

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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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@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’ve tried that. Thanks. None of us qualify for Medicaid, and we can’t afford insurance. I do go to a sliding scale facility, but I am unemployed so it’s hard to afford even that.

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I have already been tested for lupus…

My mom thinks we have myalgic encephalomyelitis. It sure sounds like a strong possibility.

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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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How can you not qualify for medicaid if you don’t have a job?
Have you applied for Welfare, this would clearly grant you access to medicaid.
or,
1. try the ER. ERs can’t deny you and have access to state subsidized programs that may not be available to social services offices or would otherwise take months..
Don’t be shy, cry if necessary. Make sure to ask inside the ER, to enroll you , if they agree, it would be retroactive to that date.
or,
2. Are there any Free Clinics in your area?
or,
3. check online for Medical Assistance Programs. For example; fibromyalgia assistance programs at a .gov site, you can connect with options of grants or programs of multiple choices. if you don’t have an income you would qualify. Fibromyalgia would be a feasible disease to claim to get your started, it covers almost everything painful from head to toe and does not have a specific diagnostic blood test.

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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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We wouldn’t need ObamaCares in the U.S. if everyone who needed Medicaid qualified for it. Where I live (Missouri), you have to meet all kinds of guidelines. Since I am over 18, don’t have kids under 18 and have not been diagnosed with a disability, I don’t qualify.

1) I have gone to ERs many times (5 different ERs over the past 2 years) with seizures. They are not required to try and find out WHY I’m having seizures—all they have to do is stop them. None of them have mentioned programs other than their hospital’s indigent care program, which covers ER stuff, but not appointments in their clinics.

2) I did finally find a clinic with a sliding scale fee. They charged me $30 per visit while I was making minimum wage, which was pretty good. I’m going to reapply now that I’m unemployed. However, the same is true there as everywhere: you are at the mercy of doctors, and if they don’t think there’s reason to test you for anything specific, they won’t, and you can’t order tests on yourself. My current doctor was the first one who found my Vitamin B deficiency. She also told my mom that she would consider testing me for things if the neurologist she sent me to didn’t find anything. The neurologist is one I have seen several times and he has ignored me when I told him my mom and sister are also sick and MAYBE WE HAVE SOMETHING HEREDITARY OR ENVIRONMENTAL!!! So I’m going back to my dr. with a list of tests my mom thinks are relevant and hopefully my dr. will be willing to run some or all of them, if she agrees that there is good reason.

3) I have to have a diagnosis for an assistance program, right? For example, if I got fibromyalgia assistance, it would specifically cover treatment etc. for fibromyalgia! I have to know what I have first.

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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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Healthcare.gov led me to the clinic I have gone to, which is good, but again, I am at the mercy of a doctor who may or may not order tests beyond CBC and ordinary stuff like that. They also have info about “affordable” health insurance, which is NOT affordable to us. And as for “Mayo takes almost all programs,” my mom was first told that she woulkd have to bring $3000-3500 to an appointment. When she dug deeper, she was told that one of our doctors would have to call and explain to their doctor why we need to be seen there (ie: why the local doctor can’t meet our needs—good luck finding Dr. Local who is willing to call Dr. Mayo and tell him that Dr. Local can’t meet a patient’s needs!).

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@stinkbutt

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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We didn’t just stop taking medications. We have never taken anything long-term, except the anti-seizure medication that I take now.

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