After much thought and delibertion I finally decided what I must do about Supercilious’s summary letter. The summary letter was a complete farce and I have decided to funnel my rage and frustation into a rebuttal letter. I sent this rebuttal letter to the referring physicians. I have also decided to start an email and fax campaign in defence of my illness. I realize that this will more than likely be a one-sided campaign. However, from now on my voice will be heard! From now on I will also make sure that the notes taken about me by doctors or residents during a consultation will be accurate and not a figment of their imaginations.
The letter I wrote reads as follows:
After receiving a copy of the letter Supercilious sent to you, I have a number of questions and comments. On my first visit to Supercilious, I was ushered into a consultation room and seen by a resident. I handed the resident my symptom list and my pictures for comparison. The resident asked numerous questions which I answered to the best of my ability. My blood pressure and heart rate were taken. No other physical examination was done. The resident left the consultation room. About 30 minutes later I was finally honoured with the presence of the so-called great Supercilious. He asked a few more questions, ordered a series of blood work and urine samples and told me I was free to go home. No explanations, no discussion of my symptom list or my pictures – nothing!!!
I received a call from his nurse a few days later telling me to come in on June 21st for a Water Deprivation Test. Of course, no one bothered to ask me if I was on diuretics. Could it be that Supercilious is not aware of the fact that a person must be off their diuretic for at least a week before the Water Deprivation test? As a result I was on diuretics when I took the test.
I had a follow-up appointment with Supercilious on August 15th. Quite frankly, that visit was a total waste of time and effort on my part. Again I was shown into a consultation room and seen by a resident. This resident took 4 pages of notes. He actually had to leave the room to get more paper. He checked my leg muscles and asked me when I had lost the hollows in my neck. After the resident left the consultation room I again waited for 30 minutes until I finally saw the great Supercilious. Supercilious sat down, told me my Water Deprivation Test was normal and that I need not bother coming to see him again. He never bothered to give me one answer as to why I have the symptoms I have.
I asked Supercilious for the copies of my Water Deprivation lab results. The first blood sample of the water deprivation test was taken at 8:15 AM on June 21st. My sodium levels were 142, my potassium was low at 3.1. The lab has flagged it. The lab inserted this note with the tests done at 9:40 AM, 10:15 AM, and 11:15 AM: SAMPLE GROSSLY HEMOLYSED. SODIUM AND CHLORIDE RESULTS MAY BE DECREASED, POTASSIUM RESULT WILL BE INCREASED.
Apparently at 8:15 AM the morning of the Water Deprivation Test a blood sample was drawn to test my Arginine Vasopressin. On the lab report it says that Quest Diagnostics, San Juan Capistrano, California, performed this test. My Arginine Vasopressin result was <1.0 (less than 1.0) with their lab normal being 1.0 to 13.3.
After reading a copy of Supercilious’s letter to you, I am wondering if he and his staff are suffering from a hearing impairment or lack of comprehension? Supercilious writes that I am a 53-year-old woman whose chief complaint is frequent thirst and urination. Quite frankly, the thirst and urination was one of my lesser complaints. I am much more concerned about the symptoms that actually interfere with my quality of life!! He states that I have no history of head injury, headache or visual symptoms. Obviously no one listened when I described these symptoms. I described two whiplash injuries, a head injury that happened when I passed out in the bathroom at my parents home during a severe migraine and fell into the bathtub. While falling into the bathtub I hit my head on the bathroom tiles so hard that the tiles cracked. I have been complaining of visual symptoms for two years! I also have suffered horrendous migraine headaches in the past.
Supercilious claims that I described frequent episodes of palpitations, chest tightness and agitation. This is not true. I was asked what kind of symptoms I had had with Graves Disease. I described the palpitations, chest tightness and agitation. I told the residents that I no longer suffered from these symptoms. I described getting what I can only call adrenaline rushes in my stomach during the day and at night when they literally jolt me awake.
Supercilious states that my other complaints include weight gain of 55 pounds over the last year. Again, no one bothered to get it right. I gained 55 pounds between July 2nd, 2000 and August 30th, 2000. I have pictures to prove it! Supercilious claims that my fat distribution is generalized and that I have no increase in dorsocervical fat or supraclavicular fat pads. I guess Supercilious also suffers from a vision defect. That is one of my most obvious symptoms. I guess he never bothered to look at the pictures I gave to him. Supercilious claims my visual fields were intact. Strange that he knows this since he did not do an eye exam. He claims that I had no extra heart sounds or murmurs. Again, this is very strange since no one bothered to check my heart. I was diagnosed with a heart murmur in ——–. Supercilious claims there were no masses upon palpations of my abdomen. I have no idea when my abdomen was suppose to have been palpated. Supercilious claims I have no peripheral edema and my reflexes were normal. No one bothered to check my reflexes. Supercilious himself asked me if my hands were always puffy like they were the day he saw me!!!
Supercilious states that he would not have ordered a CT of the Adrenal glands due to the frequency of subtle abnormalities in the general population, which have been confirmed by the review by radiologists in California. Interestingly enough, when radiologists in California reviewed my CT Scans of the Adrenal glands they had a very different report than the radiologists at ———. Supercilious states that he would not have ordered a CT Scan of the Sella and that the appearance of mine was normal with no mass lesion noted. It does not take a genius to know that CT Scans are very unreliable when it comes to scans of the pituitary gland.
The impression the letter from Supercilious portrayed is that I am a 53-year-old woman who is fat, depressed, and a hypochondriac with panic issues. We mere mortals can actually read between the lines. Trust me the man does not know of what he speaks.
Obviously no ——- endocrinologist is interested in my symptoms. No one is concerned about my high cholesterol, low potassium, high sodium, high ESR, high C Reactive Protein, and high BUN. They are not interested in my fatigue, in the lumps on my Achilles tendons, the pain in my Achilles tendons, the extreme muscle weakness, and the list goes on.
When I sent a series of pictures of myself beginning in 1997 to the present day along with my list of symptoms to an American endocrinologist I got quite a different perspective on things. The American endocrinologist I have been corresponding with insists that I see someone here in ——- who is capable and actually knows something about the endocrine system in a 53-year-old woman’s body. Since I have now seen three endocrinologists in the city and not one of them has tried to get to the bottom of my symptoms I feel it is necessary for me to go to the Mayo clinic.
I would like to know if it would be possible for you to refer me to the Mayo Clinic? I need to be referred by a ——- doctor. Since I am a ——- citizen and a taxpayer, I feel that ——- Health should definitely pick up the tab for my medical care at the Mayo Clinic. I realize that the endocrinologists would just love for me to accept their lack of concern and disappear. However, I need to have my medical problems resolved before I become to ill to fight for my right to proper medical care.