Still no answers for my daughter - Page 5

hyacinth003 · ‎03-12-2010

@scotnovel wrote:
@tedEbear wrote:
@hyacinth003 & @scotnovel-----If you think about, you used to go to your Family MD and they did many tests in the office BEFORE they sent you to a specialist. Things like urine test, blood test, xrays, even some physio. Now we have to go to MD, they send you for labs at a big lab company, then off to an office that takes Xrays, etc,etc. All of this costs us money, costs insurance money, Medicare and whatever state health care system is in place for the very poor. I decided a long time ago that the MD was a blinking secretary, but really didnt take notes, just sends us to another huge $ doctor.

I absolutely agree that this happens more often than makes any sense. However, I would shop around before choosing a doctor and find a practice that doesn't operate like this. I moved to a different state a few years ago and did some research on the local doctors and found more than one that has their own lab and xray facilities. I haven't had to go anywhere outside of my doctor's office for routine labs and tests (other than a mammogram). My last few physicals everything has been done right in one office, including labs. Some of their lab work has to be sent out, but the vast majority and all the basic tests are done in house and are almost instantaneous. They draw labs when I go in for a physical and within a half hour or so the results are in and I'm ready for my regular appt. I haven't needed anything other than basic tests but my doctor is part of a practice of several doctors including some specialists so if I need more at least I won't have to go far (at least for a lot of issues).

I don't think I can put this on the new health care law. There are a lot of problems with it, but I don't think that is the problem here.

One thing is she is on Medicaid. Most doctors don't take it, and specialists are even harder to find in our area. I don't think everyone is familiar with the system, and a lot of misinformation is given. Not necessarily on purpose, just not understanding. She is getting some level of care, and for that care, I am grateful. Without a private insurance, she is at the mercy of those who CHOOSE to accept Medicaid - and most don't. The waits for care of the neurologist are crazy. I kind of talked my way into the first appointment!

What IS a problem is that doctors are outright paranoid now about prescribing narcotic pain medication. My own doctor told me they are scrutinizing their records like never before, and can get his license pulled. My husband's doctor for RA has told him the same thing. Because a number of people ABUSE or get ADDICTED to pain medication, now everyone must be under a microscope. Another interference in the doctor/patient relationship. I TOTALLY believe this is the reason my daughter has not gotten pain medication. They cannot DOCUMENT her problem, so they are afraid to give her the medication. I asked the rheumatologist if he BELIEVED she was in pain, because I felt he acted as if he was unsure. They have ALL acted like a vampire shown a silver cross. So a young woman suffers. THAT is my opinion.

I feel so helpless, scared, and sad. I can't sleep at night. I think any of us who are mothers know how this feels. She has had enough tough times in her young life.

Hyacinth

hyacinth003 · ‎03-12-2010

@scotnovel wrote:
@tedEbear wrote:
@hyacinth003 & @scotnovel-----If you think about, you used to go to your Family MD and they did many tests in the office BEFORE they sent you to a specialist. Things like urine test, blood test, xrays, even some physio. Now we have to go to MD, they send you for labs at a big lab company, then off to an office that takes Xrays, etc,etc. All of this costs us money, costs insurance money, Medicare and whatever state health care system is in place for the very poor. I decided a long time ago that the MD was a blinking secretary, but really didnt take notes, just sends us to another huge $ doctor.

I absolutely agree that this happens more often than makes any sense. However, I would shop around before choosing a doctor and find a practice that doesn't operate like this. I moved to a different state a few years ago and did some research on the local doctors and found more than one that has their own lab and xray facilities. I haven't had to go anywhere outside of my doctor's office for routine labs and tests (other than a mammogram). My last few physicals everything has been done right in one office, including labs. Some of their lab work has to be sent out, but the vast majority and all the basic tests are done in house and are almost instantaneous. They draw labs when I go in for a physical and within a half hour or so the results are in and I'm ready for my regular appt. I haven't needed anything other than basic tests but my doctor is part of a practice of several doctors including some specialists so if I need more at least I won't have to go far (at least for a lot of issues).

For many reasons, medical care has become corporate. Moving the patient along can be cost effective.

My husband's rheumatologist recently had his practice taken over by a corporation. He is only working 2 days a week now. He told my husband he will ONLY deal with issues related to the rheumatoid arthritis. He will no longer treat, say, high blood pressure, cholesterol, or any other medical issues. Those are the company rules. My own long time doctor is retiring this month because he says he doesn't want to deal with government rules any longer.

One doctor my daughter saw, a rheumatologist, practices in a huge building. There are other types of doctors, lab, xray, and other facilities there. It is convenient in its way.

Her primary doctor doesn't seem to want to deal with much. He has referred her to numerous specialists. And he is board certified in internal medicine. I am so wishing we had private insurance for her now. We can't go back to COBRA and she can't get a job with health insurance.

We went through a lot in her childhood getting care, but at least we had no insurance issues.

Hyacinth

LUVNLIFE · ‎08-31-2015

I think it may be worth getting your daughter's thyroid tested. She already has auto immune problems and this can cause symptoms like abdominal pain, IBS, severe leg and arm weakness, hair loss itching and on and on.

I just recommend this because I have PBC and was also experiencing all the symptoms I listed and more. I also go to U of I and my liver Dr. Is the one that called for the thyroid testing. Things improved significantly. Not completely but any improvement was a blessing. My best wishes for you and your daughter.

Reba055 · ‎06-23-2014

@scotnovel wrote:
@Reba055 wrote:
@hyacinth003 I know how discouraged you can get. I'm still on the merry go round of doctors and tests. I have a ton of spinal issues but my neurosurgeon doesn't think that it's causing the symptoms I'm having, or at least the severity. Most think it's ""some" kind of autoimmune problem. No definite diagnosis yet. I've been at this for YEARS. I'm having more neuro tests in a few weeks. Meanwhile I go from not too bad to horrible pain and weakness. Lately it's been really bad. I feel stuck in some nightmare Groundhog Day.

I really hope you can get to the bottom of it. I would be happy just to get to a point where it could be managed. But I'm not in my 20's. I don't remember. Has she seen a pain management Doctor?

Unfortunately since Obamacare (and this is nothing political ) my experience has been that if you don't fit into the cookie cutter of an easy diagnosis, they want to ship you off to the next guy. No one has time to deal with you anymore. It really wears you down. Best to you! Catch your breath and trudge on. That's all you can do. She's lucky to have your support.
I doubt if your being shipped around has anything to do with Obamacare. Long before Obamacare, my mother had Rheumatoid Arthritis and she was shipped from doctor to doctor and test to test for at over three years before she finally got a diagnosis. Similarly a friend of my sister was eventually diagnosed with MS but also not before seeing mutiple doctors and having a myriad of tests and being misdiagnosed more than once (again well before Obamacare). Some of these conditions are very difficult to diagnose unless you happen to get a super specialist right away.

@scotnovel As I stated, I don't want to make this political. I know certain things can take time to diagnose. I worked in the medical field for many, many years. The bottom line is physicians as a general rule don't have time to think outside the box or spend extra time with a patient anymore. They are on quotas, and don't make any money for an office visit. Have you ever looked at you EOB statements to see exactly what they are being paid as a negotiated rate from your insurance carrier? It's laughable. A waitress at the local burger joint is making more. So they order tests, bloodwork, etc., and if there's not a clear problem, they ship you off to the next guy.

I don't want to argue, everyone has their own opinion, but since O care I have witnessed a steady decline in treatment and diagnosis. And I'm in a town with some excellent doctors. I'm also hearing from the staff and nurses, many of which I know.

More and more doctors are not taking insurance and will give you paperwork to submit to your ins carrier to get some reimbursement if covered. It's becoming a sad and scary situation.

I have some chronic conditions and have spent time over many years with different specialists. I've gone through all kinds of different treatments but it's progressively getting worse. But over the last few years, I can't believe just how little time you get with a doctor and how you get the run around.

Good luck everyone.

Reba055 · ‎06-23-2014

@hyacinth003 wrote:
@scotnovel wrote:
@tedEbear wrote:
@hyacinth003 & @scotnovel-----If you think about, you used to go to your Family MD and they did many tests in the office BEFORE they sent you to a specialist. Things like urine test, blood test, xrays, even some physio. Now we have to go to MD, they send you for labs at a big lab company, then off to an office that takes Xrays, etc,etc. All of this costs us money, costs insurance money, Medicare and whatever state health care system is in place for the very poor. I decided a long time ago that the MD was a blinking secretary, but really didnt take notes, just sends us to another huge $ doctor.

I absolutely agree that this happens more often than makes any sense. However, I would shop around before choosing a doctor and find a practice that doesn't operate like this. I moved to a different state a few years ago and did some research on the local doctors and found more than one that has their own lab and xray facilities. I haven't had to go anywhere outside of my doctor's office for routine labs and tests (other than a mammogram). My last few physicals everything has been done right in one office, including labs. Some of their lab work has to be sent out, but the vast majority and all the basic tests are done in house and are almost instantaneous. They draw labs when I go in for a physical and within a half hour or so the results are in and I'm ready for my regular appt. I haven't needed anything other than basic tests but my doctor is part of a practice of several doctors including some specialists so if I need more at least I won't have to go far (at least for a lot of issues).
I don't think I can put this on the new health care law. There are a lot of problems with it, but I don't think that is the problem here.

One thing is she is on Medicaid. Most doctors don't take it, and specialists are even harder to find in our area. I don't think everyone is familiar with the system, and a lot of misinformation is given. Not necessarily on purpose, just not understanding. She is getting some level of care, and for that care, I am grateful. Without a private insurance, she is at the mercy of those who CHOOSE to accept Medicaid - and most don't. The waits for care of the neurologist are crazy. I kind of talked my way into the first appointment!

What IS a problem is that doctors are outright paranoid now about prescribing narcotic pain medication. My own doctor told me they are scrutinizing their records like never before, and can get his license pulled. My husband's doctor for RA has told him the same thing. Because a number of people ABUSE or get ADDICTED to pain medication, now everyone must be under a microscope. Another interference in the doctor/patient relationship. I TOTALLY believe this is the reason my daughter has not gotten pain medication. They cannot DOCUMENT her problem, so they are afraid to give her the medication. I asked the rheumatologist if he BELIEVED she was in pain, because I felt he acted as if he was unsure. They have ALL acted like a vampire shown a silver cross. So a young woman suffers. THAT is my opinion.

I feel so helpless, scared, and sad. I can't sleep at night. I think any of us who are mothers know how this feels. She has had enough tough times in her young life.

Hyacinth

@hyacinth003 You are so right about the pain meds. The government overreacted to the situation with pain pill mills and as a consequence have denied people that really need it. They should have gotten off of their butts and enforced the laws they already had and went after the doctors and "clinics" abusing the system. No, that takes work. They would rather put the work onto someone else.

They did the same thing with changing the scheduling of drugs like hydrocodone so now you have to pick up a prescription every month instead of getting refills. Did they even thing about the sick and elderly that might not even drive? Or how hard it is for someone sick and elderly to get to the doctor and sit and wait and jump through the hoops? I get real upset about the care and concern of our elders. And of course if you are young, you are a drug seeker.

I'm so sorry. I would try to get referred to a pain specialist. There again, with your insurance situation that might be difficult too. As a mother I can sympathize with how you feel. I'm thinking of you and pray things get better.

Kachina624 · ‎03-10-2010

Its not hard to understand why people break down and have hissy fits at medical facilities, is It?

New Mexico☀️Land Of Enchantment

hyacinth003 · ‎03-12-2010

@luvnlife wrote:
I think it may be worth getting your daughter's thyroid tested. She already has auto immune problems and this can cause symptoms like abdominal pain, IBS, severe leg and arm weakness, hair loss itching and on and on.
I just recommend this because I have PBC and was also experiencing all the symptoms I listed and more. I also go to U of I and my liver Dr. Is the one that called for the thyroid testing. Things improved significantly. Not completely but any improvement was a blessing. My best wishes for you and your daughter.

My daughter and I both have hypothyroidism! So, we are tested regularly and are on medication.

So does my dad! Guess there's genetics, huh??

Hyacinth

hyacinth003 · ‎03-12-2010

@Reba055 wrote:
@hyacinth003 wrote:
@scotnovel wrote:
@tedEbear wrote:
@hyacinth003 & @scotnovel-----If you think about, you used to go to your Family MD and they did many tests in the office BEFORE they sent you to a specialist. Things like urine test, blood test, xrays, even some physio. Now we have to go to MD, they send you for labs at a big lab company, then off to an office that takes Xrays, etc,etc. All of this costs us money, costs insurance money, Medicare and whatever state health care system is in place for the very poor. I decided a long time ago that the MD was a blinking secretary, but really didnt take notes, just sends us to another huge $ doctor.

I absolutely agree that this happens more often than makes any sense. However, I would shop around before choosing a doctor and find a practice that doesn't operate like this. I moved to a different state a few years ago and did some research on the local doctors and found more than one that has their own lab and xray facilities. I haven't had to go anywhere outside of my doctor's office for routine labs and tests (other than a mammogram). My last few physicals everything has been done right in one office, including labs. Some of their lab work has to be sent out, but the vast majority and all the basic tests are done in house and are almost instantaneous. They draw labs when I go in for a physical and within a half hour or so the results are in and I'm ready for my regular appt. I haven't needed anything other than basic tests but my doctor is part of a practice of several doctors including some specialists so if I need more at least I won't have to go far (at least for a lot of issues).
I don't think I can put this on the new health care law. There are a lot of problems with it, but I don't think that is the problem here.

One thing is she is on Medicaid. Most doctors don't take it, and specialists are even harder to find in our area. I don't think everyone is familiar with the system, and a lot of misinformation is given. Not necessarily on purpose, just not understanding. She is getting some level of care, and for that care, I am grateful. Without a private insurance, she is at the mercy of those who CHOOSE to accept Medicaid - and most don't. The waits for care of the neurologist are crazy. I kind of talked my way into the first appointment!

What IS a problem is that doctors are outright paranoid now about prescribing narcotic pain medication. My own doctor told me they are scrutinizing their records like never before, and can get his license pulled. My husband's doctor for RA has told him the same thing. Because a number of people ABUSE or get ADDICTED to pain medication, now everyone must be under a microscope. Another interference in the doctor/patient relationship. I TOTALLY believe this is the reason my daughter has not gotten pain medication. They cannot DOCUMENT her problem, so they are afraid to give her the medication. I asked the rheumatologist if he BELIEVED she was in pain, because I felt he acted as if he was unsure. They have ALL acted like a vampire shown a silver cross. So a young woman suffers. THAT is my opinion.

I feel so helpless, scared, and sad. I can't sleep at night. I think any of us who are mothers know how this feels. She has had enough tough times in her young life.

Hyacinth
@hyacinth003 You are so right about the pain meds. The government overreacted to the situation with pain pill mills and as a consequence have denied people that really need it. They should have gotten off of their butts and enforced the laws they already had and went after the doctors and "clinics" abusing the system. No, that takes work. They would rather put the work onto someone else.

They did the same thing with changing the scheduling of drugs like hydrocodone so now you have to pick up a prescription every month instead of getting refills. Did they even thing about the sick and elderly that might not even drive? Or how hard it is for someone sick and elderly to get to the doctor and sit and wait and jump through the hoops? I get real upset about the care and concern of our elders. And of course if you are young, you are a drug seeker.

I'm so sorry. I would try to get referred to a pain specialist. There again, with your insurance situation that might be difficult too. As a mother I can sympathize with how you feel. I'm thinking of you and pray things get better.

I very strongly agree with you. Instead of TRUSTING the doctor/patient relationship, they make laws directed at doctors. They ought to be working the problem, not just interfering with legitimate medical care.

My husband has to make special trips to the doctor instead of just getting a refill for paid medication for rheumatoid arthritis.

When I have asked on behalf of my daughter, they look overtly UNCOMFORTABLE. As I said, it is like exposing a vampire to a silver cross. I am an RN, I can read this like a favorite book. You don't see it in hospital settings for obvious reasons. This young woman is in PAIN and needs help.

Maybe we will have to go the pain management route even before a diagnosis.

After she has her next test (thoracic mri), I will ask the neurologist if she wants other testing, as we cannot see her for over a month from now (Feb. 19). I'd like to get anything we can done even before, so there's not more delay.

Hyacinth

hyacinth003 · ‎03-12-2010

@Kachina624 wrote:
Its not hard to understand why people break down and have hissy fits at medical facilities, is It?

No, it's not.

I had an argument with the rheumatologist about this. Politely, of course, as I am not in the business of making a bad relationship with her doctors.

He knows I am FRUSTRATED. So, I could see breakdowns and hissy fits!

Hyacinth

andrews mom · ‎09-12-2015

My sister in law has that problem too. She also has a lot of swelling. She lives in southern MO and now the Dr wants her to see a neurologits in St. Louis. It has gone into her arms. Sending thoughts to your daughter.