Medical Alert

One cannot assume that an MD knows everything about medicine.  It is our experience that a General Practitioner is most often better than a Specialist.  A GP takes a more holistic view of the patient whereas a Specialist is primarily concerned with problems within his specialty.
I recall my wife walking into our family Doctor’s office and him saying, “You don’t look well.  Tell me about it.”  A family physician asks about the family and conditions at home.  Sometimes medical problems are caused by stress, and stress covers a wide range of situations.
The current situation with my wife has taught us much.  Myasthenia Gravis is a rare disease with no known cure.  Treatment given before the diagnosis had numerous flaws.  Even after the diagnosis, errors were made.  Giving the wrong therapy aggravated the problem. 
My wife is a fighter and doesn’t accept anything just because a doctor says it. 
Example:  She takes approximately 15 tables daily.  That in itself should put one on alert.  How do these medicines interact?  We went to a specialist who made an analysis of her prescribed medications.  As a chemist, he recommended to our doctor to drop two of the tablets and suggested adjusting the amount (the milligrams) of some others.  It is a complex situation for her.  She must continue taking certain drugs as follow-up to breast cancer.  They removed a lymph node and that means that she cannot take drugs with hormones in it.   A drug with hormones was prescribed by a doctor at the hospital.  My wife said:  “No, I can’t take that.”  That is not the only time she has confronted a Doctor in what they prescribed or recommended as treatment. 
She said to me this morning on my visit to the clinic.  “I will not become an invalid.  I will not spend the rest of my life confined to a wheelchair or to a bed.  I’m going to get answers!” 
We have inquired about the disease from various sources and asked them to send information.  We also did Internet searches that I printed out.  My wife highlighted certain remarks/comments from these sources and presented them to the doctor.  She said:  “Read this.  I would like your take on this.”  It has become a challenge to educate doctors.  It is our body that they are toying with and we often become experimental patients.  Trial and error is not something one should accept.  Either they know or they don’t know what to do. 
Getting a second and even a third medical opinion is prudent.  Some people think that Doctor’s know everything about medicine.  They don’t. 
My daughter in Virginia together with her company is supporting the following:
https://www.thunderclap.it/projects/28664-teach-medical-cannabis-to-docs?locale=en
I support it also.
 
My daughter in Germany works with the elderly.  Many believe their Doctor is a God. 
At the same time, there are those who have “given up” - they no longer believe that they will get well and with that attitude, they won’t.  Then there are those who are fighters and want to get well.  It is their attitude that helps them.  Further, they get more help from hospital personnel.  My daughter has challenged those who cling to their old doctor and who feel that they would offend their doctor if they asked another doctor about their condition.  She is working to change that attitude. 
 
Either one has a old(er) doctor that has years of experience, or one has a young doctor fresh out of  medical school and still willing to learn.   
 
My wife makes copies of doctor reports and keeps them in a file.  She said, “If I am taken to the hospital in an emergency, take this folder with you.  Even the wrong anesthesia can be fatal. 
 
I wrote the above to inform.  Don’t assume anything.  Ask questions of healthcare personnel and especially your doctor. 
 
The above website is an example of what is needed to better inform the medical profession.  In the case of rare diseases, only doctors who have been exposed to this condition are informed.  In the process of finding a cure, it is our desire to alert doctors to the condition so that they can detect symptoms early.  When we received the packet of information from the DGM.  Deutsche Gemeinschaft for Muskle Kranke (Company for muscle sickness).  It listed the early symptoms.  When my wife read this she exclaimed:  “That is exactly what I had.  I kept telling the doctor about the symptoms and nothing was done.  So much time wasted on unnecessary treatment.  I would be much better today if they had only known.”
 
Suggestion:  If you have any medical problem, do some research and be informed.  If possible take this information with you when you see a physician.  Ask questions.  Once a doctor is challenged, most likely they may do their own research and be in a better position to treat you.
 
My slogan: “With every adversity there is a benefit.” applies in our case.  We will keep pushing for a solution.  We want to know about the next step in treatment.  A University Clinic/hospital appears to be that step   When we have a positive outcome we will do our best to inform others and thus eliminate much “Trial and Error” procedures.

7/9
               Abe..

                      What you say is true ! 15 years ago when I got ill they found out I had Congestive
  Heart Failure ( Like My Mother Had,) at the hospital ( I was there for 3 day vacation ..LOL,) the
  hospital Dr. gave me a prescription for a strong water pill, we'll after a week of taking it when I
  went back to the I told him I wasn't feeling right and I lost weight and he asked me what was I
  taking and I showed him the water pill prescription and he said you don't need that, stop taking
  it , your not retaining water, so I said but the Dr. at the hospital said I had to take it, he said I'm
 your Dr. not him ! Now just a few months ago my Dr. ( new One I've had for four years,) he thought 
 just maybe we could lower one of my Beta Blockers from 20 MG to 10 Mg we'll after a few days I
 started to feel ill, I went back and told him it has to go back to 20 MG I've been taking it for 15 yrs
 as they say why are you fixing something that's not broken? I was put back on 20 MG...

                                                                   Cheers...Joe

The human body is still very much a mystery.  Physicians know very little about the brain for example.  Thus, mental issues receive mostly "exploratory" treatments, searching for "help" that in many cases never arrives.

I think something is wrong with the way medicines are developed and the profit motive. I think medicines should be developed with an incentive to prevent disease, funded by the profits from hospitals and pharmaceuticals that treat the disease after it arrives.  Medicines that treat existing disease should have limited profits while prevention should receive large incentives and rewards when discovered.

We have an illness society instead of a wellness society.  Thus if we went to physicians early and they were trained in nutrition and whole foods and avoiding toxic industrialized food sources, even our food sources would have to change.

My best doctor ever was a family physician, Dr. Gursoy.  When it came time for school exams, he would line up my three boys and examine them one, two, three and charge me one exam fee.  When I had chronic migraines and I stumbled into his office since if I drove, I couldn't drive home, he would always get me in for my shot and let me walk home.  When my gynecologist wanted to do a bunch of cutting and slicing because I was the right age - ole Dr. Gursoy said he'd examine me regularly and if I wasn't in any pain not get those procedures.  Thanks to ole Dr. Gursoy, I still have all my body parts 40 years later and that gynecologist was short a condo payment.

I recently had a close second , but she opened her own practice to remove herself from the constraints of being a salaried Dr. with a hospital setup.  Now, she doesn't take my insurance as I have the cheapest, an HMO.  I've been through 3 physicians since who all quit and went elsewhere.  My knew doctor looks like she just got out of school yesterday and spent about five minutes to refill my prescriptions and give me a referral to a specialist I didn't follow.  She asked me what to refill.

Thanks for the comments Joe and DK.  I believe awareness is important and that's why I'm sharing our experience.  I remember the time when we lived in Smyrna, Georgia and how she was handled by the doctor.  Her complaints were dismissed as "part of old age".   I get the impression that some doctors rush through an appointment to collect their fee and to see the next patient. 
We did not find that to be the case with our German doctor.  He retired about a year ago and now his daugher, a new physician, is taking over his patients.  He established a clinic with three other doctors on staff.  On our last visit I asked his daugher about her father.  She said that he got bored sitting around the house and gardening, so he joined "Doctors without Borders" organization and is now traveling.  At the moment he is in Thailand.  I think that is a great thing.  With his years of experience he has much to offer.  He gets to travel as was his passion and at the same time can utilize his experience for humanity.

7/9

             Abe..

                        Your retired Dr., is awesome !  My Dr. and several other Dr.'s that belong
    to St. Vincent's Hospital once or twice a year go to South America to help poor children
    I think it's on the same line or it maybe the same one " Dr.'s Without Borders,"

                                                           Cheers....Joe.......

Doctors without Borders is a magnificent organization.  I think there ought to be more opportunities for retired people in other professions that are not particularly able to foot their own expenses.  I would love to travel as a teacher.  I am presently tutoring a young man and remembering that I was a master teacher and my elementary credentials are still current.  Someone could hire me at a very reasonable cost to teach other teachers or to teach in a classroom anywhere in the world where English is used in the classroom - or I can teach ESL - but I cannot live as when younger.  I need a clean, safe place to sleep and eat - which I don't think is much.  I need my transportation paid.  I need sufficient income to live in the country of the assignment. I need access to health care in emergencies. These things are not needed by Doctors without Borders as they have sufficient retirement income, and their medical care is among their colleagues.  I also think they live on ships - not certain.

7/9

                   DK...

                           Your calling is Japan....It awaits you..

                                        Cheers..Joe....

DK.  I think you hit on an idea that is worth pursuing, especially with teaching.
At one time I think there was an organization for help with Business Start Ups.  Retired businessmen offered their services helping to prepare proposals to get financing as well as business plans.  It was government sponsored. 
You might inquire with the government if such an agency/program exists for teachers.  If not, why not?

I have often thought about offering my experience in going into foreign markets, but never pursued it.  I did mention some of that aspect in my book.  "How to" eliminates much trial and error as well as costs.  With your expertise in teaching it would be a shame for that to lie dormant when a need exists. 

Doctors without borders are providing a great service.  I would think that much of their payment is in the satisfaction of helping others.  Naturally they are part of an organization that provides financial suport for their accommodations and travel.  They are compensated with a monthly salary based on their experience.  If you google it you will also find that the organization solicit donations. 
There are opportunities within the peace corps.  Perhaps education is part of that organization.

My mother-in-law's doctor said he had helped more patients by decreasing rather than increasing  their meds.

I do believe the power of pharma in this country leads to too many meds.

I believe there is a reason they say, "Doctors practice medicine!"

Exactly, Don.
Patients are often used as experimental subjects.  Giving a prescription, watching reaction, adjusting the meds and see how that goes.  When it is you they are practicing on or someone you love, it is unacceptable.  On the other hand, without trying something they wouldn't know if it works or not.  Just because it worked on a Rat doesn't mean it will have the same reaction with a human.

Research continues for remedies and I applaud that.  A cure for cancer is still sought. Even when they find something that appears to work, the side effects can be worse than the cure.  Monitoring patients is a must.  Something similar is happening with my wife.  With Myasthenia there is much trial and error with treatment.  At the moment they are trying to control the disease so that the patient can function normally.  Since there is no known cure, the only thing they can do is experiment with various drugs and the dose of the drugs.  When they see improvement in one area it becomes a sign of success. 
It is just another example that Doctors don't have all the answers and continue to learn (practice) on the patients.  One could compare a doctor to an auto mechanic.  The auto mechanic will try various things, change parts, etc., until they find the problem.  The customer pays the cost of their efforts.  Same thing with doctors.  The patient is charged for the doctor visit along with the medications prescribed.  Repeat business is desired in our capitalist system.  Patients are customers and having repeat business is a good thing. 
We can't change the system, but we can accept or reject what they do to us.  If it doesn't feel right, don't do it. 
I had a frank discussion with the Head Doctor at the Clinic where my wife is a patient.  I questioned him on a variety of things.  With some of his responses I said: "I don't buy that."  I told him what I wanted to happen and what I expected.  He now knows that we won't let any stone unturned seeking a solution.  The result of the conversation will mean that my wife will be transferred from his facility to a university clinic - a non-profit teaching institution familiar with Myasthenia.  That will happen within the next several weeks.

When my brother was a a child, his asthma just defied treatment and led to perpetual ER trips at all hours for years.  Finally, the doctor sent them to the University of Michigan where they formulated shots specifically for him that finally provided a normal existence.  He had to continue the trips to U of M (3 hours each way) periodically to have the shots reformulated for his home doctor.  

Much of medicine has to be formulated for the standard, but may miss the mark for individuals. The profitability and costs force standardization of medicine that may really require individual dosage.  It is more exact than a pinch of herbs in a tea, but sometimes I wonder if we've missed something in the rush for profits that might have been gained from the old fashioned formulary pharmacy.