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?

@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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Not to worry, with the state & trend of our economy , by 2014 when Obama Cares goes into effect it will be a welcome mandate by the 98% of us that can’t afford to be sick.

Sorry about the punitive legislation in Missouri, it’s a crime against Civil Rights & void of any hiuman dignity.

In the mean time, you must continue to be as clever as you have been so far.

Environmental or genetic is not that far fetched. Auto immune diseases do run in specific ethnicities, Scandivavian, African American and do afflict a higher % of women than men.
Our air, water, soil, food and almost everything is tainted with industrial toxins or is petroleum based. How can that not effect us all in a severe metabolic way?

1) many times how you are perceived in a social service setting is all about the language used with social workers that are over worked & underpaid.. As your situation changes revist all of your options. Ask these providers exactly what it is you need to do to qualify and kiss butt often, if it applies.

2/3) you may or may not need an exact diagnosis to apply to assistance programs. The requirements & benefits vary in random ways. Some are research, discounts or just full on grants. Some require poverty level income and some don’t require anything…
If you do need a diagnosis or an assumption of a diagnosis, try to tap one of your FC Dr.s who would tend to be more empathetic towards your problem solving goals & lack of medical ins.

Vitamin deficiencies can be serious, many chronically ill or long term med/drug users have constant depletion of vital anti oxidents due to these stresses that need daily replenishing.

Deficiency in V-D & B complexes can lead to almost every symptom you describe. These 2 vitamins effect hormonal levels, the heart, muscle functions, brain activity, vital organ functions, the skin, hair, nerves, mental function, depression, they also prevent inflamatory & other diseases, the list is endless.

If you can afford to take the A, B, C’s of antioxidents i’m sure you would feel better and be able to narrow your focus to what is persistant once these levels improve. 2 weeks to 30 days tops with continued improvement as time goes on.

The rule of thumb is A, Super B Complex, C, D-3 , Callcium (2,000 mg) with Magnesium and flax seed oil or fish oil with omega 3, 6 & 9.

If you cannot afford these or are not eating properly a multiple vitamin with iron of any brand would be best and the flax seed oil..

Hopefully the Free Clinic & the assistance programs can work in tandem to help you navigate thru this. The most important piece of advise is to not give up, stay persistent so you can get thru this. You can have your life back, it does not have to be ruled or oppressed by this temporary situation.

You are a smart young woman so find a smart dr. at that clinic and don’t give up.

Let me know if i can help.

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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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One more important thing, when you do get another blood test insist on a complete blood panel with all levels including thyroid, vitamins & minerals.

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GO TO MAYO CLINIC! In Rochester, MN. They are the best Get there now!

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@jaanderson1

GO TO MAYO CLINIC! In Rochester, MN. They are the best Get there now!

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We’ve been trying for months to get in! We don’t have health insurance or the $3000-5000 quoted to us (depending on who we talk to, it’s either $3000, $3500 or $5000) to get in without health insurance. And the only way to get in with no insurance or cash up front is to have your local doctor call and tell their doctors that you have to get in to the Mayo because you can’t get the care you need locally—good luck with that!!! We’ve asked local doctors for a referral, and even the one who told us we should go to the Mayo is not willing to give us the referral.

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@jaanderson1

GO TO MAYO CLINIC! In Rochester, MN. They are the best Get there now!

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Why do specialists always look only at the symptoms that fall under their area of expertise and tell you that’s the problem??? I’ve seen a neurologist a few times, mostly in the ER when I have seizures, who seems to ignore all my other symptoms— and the fact that my mom and sister have many of my same symptoms but NOT seizures— and he wants to hook me up to a machine to see where my seizures originate and then remove that part of my brain. What if I have an illness that could be treated and the seizures stopped permanently without surgery? I REALLY think we would have been diagnosed and treated LONG AGO if we had insurance.

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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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@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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Thank you for the encouragement. My mom has gathered all our records and studies them regularly. The problem is that when she asks a doctor to test us for “X,” the doctor invariably refuses. I think that is in part because we lack insurance and in part because they assume she doesn’t know what she’s talking about, because she is not a doctor. She has had over 4 years to compare our records and look at various illnesses and the way in which symptoms present, and she has a pretty brief list of things she thinks could be causing our illness, but nobody will take her seriously. She’s trying to get a nurse practitioner to get us into a program in Maryland for people with undiagnosed illnesses, since it’s so hard to get in to the Mayo without money or insurance. I’m pretty close to just accepting that I will be on anti-seizure meds for the rest of my life and giving up on seeing a new doctor…What’s the point?

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i feel so sorry for you. you must have so much pain. hopefully, it’s some food allergy/allergies as these can cause severe symptoms. diet is one where you can do experimentation yourself. look online at the different effects, for example, milk allergy can have as opposed to milk intolerance. my cousin is allergic to avocado and it’s a real severe neurological reaction where she ends up in the emergency ward if it somehow gets in her food in a restaurant.

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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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@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.

Jump to this post

the fact that you are all haveing symptoms leads me to beleive that not only is the possibility genetic, but enviornmently is a strong possibility. In one of the threads, positive ANA/lupus antibodies where found. Do you experience photosensitivity? Do you need dark glasses when you go outside? Any rashes or skin issues, not just the typical butterfly rash on the face….alot of Lupus patients do not present with this and so alot of docs discount this diagnosis.
Some folks develope “rashes” else where. these can be anywhere on the body, esp. the trunk. Some only develope a lacey pattern to the skin. So frequently it is not the text book symptoms and it appears alot of MDs don’t think outside the box so to speak. But you and your family can and should, and that sometimes causes issues with their egos. Persistance is key.
What other positive lab results are there? What was the sed rate? Cardio lipid?
Next time your mom suggests a lab be done and the doctor refuses, ask why they are refusing? DOCUMENT EVERYTHING, keep a journal to refrence back to. This tool will help your situation, especially when multi docs are involved.
Has epilepsy been ruled out? The seziures should be brought under control, but be cautious about any invasive procedures like surgery with the helter/skelter care/medical help you have received, that is alarming they would suggest this with out a formal diagnosis.
Hope your journey becomes easier.

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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

I feel your pain. Been there with the system. IT is not as easy as people think to get the medicare or medicaid. Whatever they call it now. HAve you tried going to a lawyer that may handle social security or health care law suits? MY brother had to to finally get help. Sometimes it just depends on the case worker not wanting to do their job, IE lazy, that keeps you from getting help.

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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

AS far as OBama care goes. Our insurance changed drastically this year. AND we have been blessed with awesome insurance through the company my husband works for. THANK GOD! I have already been to the doctor a few times this year and we have a wage works card and I told my husband with Obama screwing with our health care we will all die before we can get good health care. DOctors dont want to do anything but the basics anymore. ITs to much of a hassle for them with these sick insurance companies screwing them like they do us and then Obama had to Screw with our health care even worse. MAyo is my last chance… I can’t afford anymore doctors after this. I have been going on 7 years with multiple conflicting diagnosis and I told my husband after the last episode a few days ago MAyo clinic was it for me. And I am not willing to live through this pain anymore. Thanks Obama and insurance company!!

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