Being a good patient

[curious_guy (imported)]

I think I might be a bad patient. I would like to know what I should do to become a better patient.

If a doctor tell me something that is obviously a lie, what should I do? Should I just ignore it? Should I say, "Thank you Doctor for lying to me."? Should I bring proof of the lie to my next appointment and say, "I think you might have made an error. Here is proof that you were wrong."?

If it becomes obvious that the doctor does not know anything about my illness, is not willing to learn anything and does not even believe that my illness exists, what should I do?

If I have a physical illness that was recognized by the World Health Organization in 1969 and the doctor says that my symptoms are all in my head, what should I do?

If a doctor deliberately keeps me waiting for hours after my appointment time because I have an illness that he/she does not like, what should I do? (I have had this happen at least twice.)

[bobbie (imported)]

You did not say what is your medical condition is. That could shed some info on what you should do. If it is a condition related to wanting to be castrated. That would not set well with many doctors. Please tell more about what the doctor has issues with.

[speedvogel (imported)]

In your case, your problem is you say you have a disease which may be recognized but has no real defining symptom. The only thing I can suggest for you is to write down a complete list of your symptoms. When confronted with the whole litany, perhaps a doctor will have the light turn on.

Most people everywhere who have chronic fatigue (same condition, different name) do not receive proper treatment as there is no agreed diagnosis and that makes it very hard to achieve any sort of consensus on what to do or how to do it.

Now you also stated in the other thread that you are on Medicaid, I believe. In the most basic way and very briefly, you are screwed. You will not get repeated referrals to specialists and exotic testing to determine a nebulous condition that is in the diagnosis manual, but cannot be accurately diagnosed even by the best doctors. The finances of Medicaid make that a certainty.

Even if you were to be properly diagnosed, your chances of getting Social Security disability are virtually nil as Chronic Fatigue is one of the most easily faked diagnoses as there is no concrete standard for this diagnosis.

I wish I could give you some encouragement, but you are in a bind that will not get better until you are able to get some private insurance and get a referral to a place that can make this diagnosis.

I am diabetic. The defining symptom is a fasting blood sugar of 126 and above. That one is easy. I have no intention of ever claiming disability even though I could if I push the issue a bit.

I have a son-in-law who has no colon, damned near died, and lives in pain every day of his life and he has no intention of ever taking disability even though he can get it.

This is almost brutal and I hesitate to say it. Since you, deep down in your heart and soul, know you will not get disability, pull yourself up, find a job you can do and become a semi-functioning part of society. You will feel better, and possibly some of your symptoms will ease up a bit and you can make some progress. I am not trying to be mean, but from a long distance, this is the best advice I can give.

Speed

[curious_guy (imported)]

In your case, your problem is you say you have a disease which may be recognized but has no real defining symptom. The only thing I can suggest for you is to write down a complete list of your symptoms. When confronted with the whole litany, perhaps a doctor will have the light turn on.

Most people everywhere who have chronic fatigue (same condition, different name) do not receive proper treatment as there is no agreed diagnosis and that makes it very hard to achieve any sort of consensus on what to do or how to do it.

Now you also stated in the other thread that you are on Medicaid, I believe. In the most basic way and very briefly, you are screwed. You will not get repeated referrals to specialists and exotic testing to determine a nebulous condition that is in the diagnosis manual, but cannot be accurately diagnosed even by the best doctors. The finances of Medicaid make that a certainty.

Even if you were to be properly diagnosed, your chances of getting Social Security disability are virtually nil as Chronic Fatigue is one of the most easily faked diagnoses as there is no concrete standard for this diagnosis.

This is almost brutal and I hesitate to say it. Since you, deep down in your heart and soul, know you will not get disability, pull yourself up, find a job you can do and become a semi-functioning part of society. You will feel better, and possibly some of your symptoms will ease up a bit and you can make some progress. I am not trying to be mean, but from a long distance, this is the best advice I can give.

Speed

I did get SSI disability in 1987. This was fifteen years after I became too ill to work. If I did ABSOLUTELY NOTHING but work, eat and sleep, I might be able to work at a regular, sedentary, job six hours per week. Do you know of a job that I could get that would allow me to support myself working six hours a week. I am fifty six years old. I have not worked at any job for more than 35 years. Exactly who do you think would hire me?

Chronic fatigue is not the same as Chronic Fatigue Syndrome. The current definition of CFS used by the CDC is the empirical definition. With this definition 38 percent of people who just have depression meet the new definition of CFS.

CFS is not Myalgic Encephalomyelitis. Myalgic Encephalomyelitis has defining symptoms. It can be easily diagnosed by any doctor who is familiar with it. The defining symptoms are: Sudden onset and post exertional malaise. There are other objective findings. If you want to know more, look at this web site.

http://www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm

[Elizabeth (imported)]

I was diagnosed with Fibromyalgia in 2002, some 16 years after I first started having symptoms. It took a good Rhuemetologist and a lot of tests. As you well know, CFS and Fibromyalgia are closely related. The only difference being in Fibromyalgia the primary symptom is pain and in CFS the primary symptom is fatigue.

Even though everyone told me it was impossible to get Social Security Disability for Fibromyalgia, I was approved the first time. However, the government did not officially recognize my Fibromyalgia. Instead they approved me because of depression and the fact that I am on narcotic pain killers, anti-depressants, sleeping medication as well as muscle relaxers. Probably not a good idea to do electrical work under the influence of such drugs.

However, when the FDA approved the drug Lyrica and Cymbalta for the treatment of Fibromyalgia, they defacto admitted that Fibromyalgia exists. Also it was finally given diagnostic criteria by the American College of Rheumatology and legitimized. However, some doctors still insist that this is a psychosomatic illness that requires a shrink, not a real doctor.

So if you doctor does not listen to you or does not believe in your illness, find one that does. Don't walk, but run away from this quack doctor. Remember, doctors work for you, not the other way. And guess what? A lot of doctors only got "C's" in college and had to cheat to get them.

I went for 16 years with no doctor being able to tell me what was wrong with me, until I found the right doctors. That is the key and that is how you get your disability approved.

Elizabeth

[curious_guy (imported)]

I was diagnosed with Fibromyalgia in 2002, some 16 years after I first started having symptoms. It took a good Rhuemetologist and a lot of tests. As you well know, CFS and Fibromyalgia are closely related. The only difference being in Fibromyalgia the primary symptom is pain and in CFS the primary symptom is fatigue.

Even though everyone told me it was impossible to get Social Security Disability for Fibromyalgia, I was approved the first time. However, the government did not officially recognize my Fibromyalgia. Instead they approved me because of depression and the fact that I am on narcotic pain killers, anti-depressants, sleeping medication as well as muscle relaxers. Probably not a good idea to do electrical work under the influence of such drugs.

However, when the FDA approved the drug Lyrica and Cymbalta for the treatment of Fibromyalgia, they defacto admitted that Fibromyalgia exists. Also it was finally given diagnostic criteria by the American College of Rheumatology and legitimized. However, some doctors still insist that this is a psychosomatic illness that requires a shrink, not a real doctor.

So if you doctor does not listen to you or does not believe in your illness, find one that does. Don't walk, but run away from this quack doctor. Remember, doctors work for you, not the other way. And guess what? A lot of doctors only got "C's" in college and had to cheat to get them.

I went for 16 years with no doctor being able to tell me what was wrong with me, until I found the right doctors. That is the key and that is how you get your disability approved.

Elizabeth

As I have already written twice, I did get SSI in 1987. I doubt that there are ANY doctors within 70 miles of my home who know about and believe in Myalgic Encephalomyelitis or CFS and accept Medicaid.

[feedback (imported)]

One doctor told me I had chronic fatigue syndrome. another told me I had lupus, still another told me I had fibromyalgia . One doctor told me it was all in my head and not to bother him again. It was not till I started going blind that they bothered to do any real testing and found I had a huge pituitary tumor. Even when I was diagnosed they did not start any treatment locally but referred me to a specialist out of town who could not believe how badly my case was handled. Don't give up, keep looking for answers.

[transward (imported)]

I think I might be a bad patient. I would like to know what I should do to become a better patient.

If a doctor tell me something that is obviously a lie, what should I do? Should I just ignore it? Should I say, "Thank you Doctor for lying to me."? Should I bring proof of the lie to my next appointment and say, "I think you might have made an error. Here is proof that you were wrong."?

If it becomes obvious that the doctor does not know anything about my illness, is not willing to learn anything and does not even believe that my illness exists, what should I do?

If I have a physical illness that was recognized by the World Health Organization in 1969 and the doctor says that my symptoms are all in my head, what should I do?

If a doctor deliberately keeps me waiting for hours after my appointment time because I have an illness that he/she does not like, what should I do? (I have had this happen at least twice.)

I do not know the details of your situation, but I do know a little about human nature. Calling anyone a liar, whether they are one or not, pretty much eliminates any chance of getting anything useful from them in the future. If you have called the doctor a liar, that would pretty much explain the waiting. That is a not uncommon technique, to get rid of patients they can't legally abandon.

Transward

[curious_guy (imported)]

I do not know the details of your situation, but I do know a little about human nature. Calling anyone a liar, whether they are one or not, pretty much eliminates any chance of getting anything useful from them in the future. If you have called the doctor a liar, that would pretty much explain the waiting. That is a not uncommon technique, to get rid of patients they can't legally abandon.

Transward

I have never actually called a doctor a liar. I did bring in a photocopy of a page from a medical text book that proved that he was either a liar or grossly incompetent.

[transward (imported)]

I have never actually called a doctor a liar. I did bring in a photocopy of a page from a medical text book that proved that he was either a liar or grossly incompetent.

You don't have to call someone a liar; it sounds like your actions pretty much said the same thing. And medical textbooks change all the time. Only recently everything doctors knew about ulcers had to be redone because of the discovery of a virus. The only way you are going to get what you want is to find a doctor willing to work with you. And that will never happen if you challenge his honesty and competency.

Transward