I didn't intend to create this blog today but fate lead me here. I have another blog,Iamdying.net My life is very difficult right now. I have frontal temporal degeneration which is a degenerative brain disease. It is fatal. I was diagnosed about a year ago. I have been having symptoms for five years but I didn't know what was wrong. I have had a chronic pain disorder, complex regional pain syndrome for over ten years. I didn't receive a diagnosis for that until 2003.
I say I am a professional patient because when you have several chronic illnesses that affect your life, the illnesses take on a life of their own. I spend quite a bit of time researching my illnesses. It took me several years to find good doctors. By good doctors I mean physicians who are problem solvers and have the ability and the willingness to find out what is going on with their patient and then recommend appropriate treatment or referral to other physicians and services.
So many physicians who are practicing today are burdened down by insurance and governmental requirements. Medical malpractice insurance is outrageously expensive.
If the physician is profit motivated or they work within a group of physicians who are motivated by profit each patient is assessed by types. Is this patient a complicated patient meaning does this patient present a myriad of symptoms that may be difficult, costly and time consuming to diagnose and treat? I have often been labeled as a complicated case i.e. complex lady.
GUIDELINES TO FOLLOW DURING VISIT WITH DOCTOR
I worked with physicians for a number of years. One of them told me that the average physician stops listening to the patient after five minutes. Part of being a professional patient is to present a concise brief history. I have learned to present my major symptoms or worries at the beginning of the conversation.
I also bring with me a list of my medications, dosage information, allergies, known diagnoses and surgeries. I give this list to the doctor. I do this even if I have had to fill it out as part of the paperwork before the visit. Physicians often do not look closely at the information you have taken the time to fill out on a form.
Since I do have multiple illnesses and I sometimes have difficulty communicating, I bring my spouse with me. If you have symptoms that are more complicated than the flu, a stomach ache or a sore throat, I advise everyone to take someone with them who is willing to speak for them and confirm symptoms. I am fortunate that I have a loving, intelligent spouse who has been there for me down this rocky road.
As I said, I had worked with physicians for a number of years. I've seen them at their worst and at their best. My previous medical knowledge has been helpful for the research my spouse and I have been required to do to learn about my conditions. Working in the health care field did not prepare me for all the difficulties and complexities of being a professional patient. The training is on the job, sink or swim, and hopefully you will come out surviving.
I started having persistent right sided abdominal pain during my last trimester of my last pregnancy. It did not go away after the delivery of my child and my OB told me to see an internist or family practice doctor. I went to a local general practice "suburban" doctor. I had been ill as a child and I thought what many people still think that you as a patient will go to the doctor, the doctor will listen to important details regarding your medical history, he or she will perform a thorough examination and then he or she will tell you what they think is wrong with you, provide you with medication and/or access to treatment and make appropriate referrals to specialists as necessary.
Marcus Welby no longer exists. On my first visit to the doctor, he entered the room,took a quick look at my chart, asked me about my symptoms, interrupted me after about ten minutes, asked me a few questions. Then he did a cursory quick routine examination. His nurse had taken my vital signs. He listened to my heart, told me to cough, looked into my eyes with a flashlight, peeked into my ear with an otoscope, told me to stick out my tongue, and then performed a basic neurological function test.
He then asked me if I had a history of depression, anxiety or suicidal thoughts.
The doctor turned to leave the room and said he would be back in a minute. He came back and reaffirmed my complaint of persistent ongoing pain in the right abdominal area. He said nothing appeared to be abnormal. He gave me a two week supply of Lortab(pain reliever) and ordered a urinalysis, routine blood work up and abdominal x-ray and told me he would call me when the results came back to his office.
I waited a week and I hadn't heard from him so I called his office and made an appointment. He came in, looked at the test results and said everything looked okay. I told him my pain was so severe I couldn't work anymore. He told me again that the tests were negative. I asked him if he could refer me to a specialist. The doctor said that there was nothing wrong with me so he didn't know who to refer me to. He advised me to see a psychiatrist.
THE SPECIALIST MERRY GO ROUND
Having no luck with the gp, I went to a family practice doctor and a gastroenterologist I had previously worked with. The family practice doctor was a nice guy. He really listened to me and did a more thorough medical examination. He had previously seen me when I had a kidney stone. He told me he would treat me for routine illnesses. He said that there was definitely something wrong with me. I asked him for a referral. He candidly said that none of the doctors that he could refer me to would be able to figure out what was wrong with me. He said he didn't have admitting privileges at any large teaching hospital so he couldn't refer me to the kind of physician I needed to see. He suggested that I see a gastointerologist, a board certified internist, possibly a urologist, an orthopedist and a neurologist. He lamented that because of insurance and Medicare that physicians could no longer admit a patient to the hospital and keep the patient in the hospital while he or she was seen by a number of specialists.
I then went to see a GI guy I had worked with. I found out that he was actually semi-retired and when I went to see him I discovered that his office was actually a small room with a lot of boxes and his wife was his nurse/receptionist. He did a thorough abdominal examination. Then he recommended that I change my diet and read a few books he suggested.
I saw a board certified internal medicine doctor who was my mother's doctor. He had me write an extensive history. This elderly doctor spent a great deal of time with me discussing my concerns. He assured me that he would stick with me until we found out what was wrong with me. He ordered a CT scan of my abdomen and a CT scan of my spine.
When I went back for a follow up visit, I learned that he had retired and I saw a younger doctor. He told me my tests were normal and told me that my pain was probably a psychsomatic disorder meaning that anxiety and stress was causing me to have pain. He recommended I see a pain management doctor. I had no idea at the time what a pain management doctor did. The one he referred me to was a psychiatrist and I got upset and didn't follow up on his referral.
I saw several specialists who gave me a variety of possible diagnoses. I was still working so I spent what little time I could going to doctors and ruling out these diagnoses.
Finally, I went to a board certified GYN who had treated the ex wife of my future husband. She said I had abdominal adhesions and she needed to operate.
LIFE CHANGING EXPERIENCE
She explained that she would perform an abdominal laparoscopy to remove the adhesions. After she put me under, she found massive abdominal adhesions so she decided to convert my operation to a laparotomy which involves cutting open the abdominal cavity. During the procedure, there was a complication and she accidentally damaged some nerves (I did not find this out until much later.)
After I woke up from surgery, I had extreme right sided abdominal pain that spread to my lower back, my buttocks and down my thigh. She assured me it would go away and nothing happened in surgery. When they got me up to walk I found that it was difficult to walk.
She discharged me although I was having much difficulty walking. This continued for two weeks. I saw her for a post op visit and told her about my pain, etc. She explained to me that I probably had a psychosomatic disorder in which the body responds to anxiety and depression. She told me my pain was "real" because she had actually been involved in an operation where a woman's bowel had contracted and spontaneously released. She said this happened in spite of the patient having no existing pathology or disease. So she put me on an anti-depressant and sent me home.
I finally was able to walk but the pain did not go away. I extended my two week postoperative leave from work. I called to make an appointment but the doctor refused to see me.
The pain was so severe that I had to quit work. I moved in with my future husband. We started on a long course of seeing specialists to find out what was wrong with me.
This lasted for several years. I realized one reason why medical costs are so high.
Each doctor I went to reordered tests that had been done by a previous doctor. I saw a rheumatologist who thought I had some weird spondylosis. He put me on a strong medication that is used in conjunction with chemotherapy. I couldn't tolerate it. He refused to see me again because I wouldn't follow his treatment. He did do a full body bone scan which revealed multiple hot spots all over my body. The doctor did not know why.
I saw multiple neurologists, gi specialists, urologists, orthopedic surgeon and a few endocrinologists. I had every lab test available. Some of my labs were abnormal but no one knew why. I had multiple x-rays, CT scans and a few MRI's plus I was scoped up and down.
THE VOMIT COMET
Over the years I had occasional bouts of severe abdominal cramps followed by protracted vomiting. It would happen maybe three times a year. I would go to the emergency room, they would give me anti-emetics and pain medicine then I would go home. Right before I had the surgery for abdominal pain, I started having frequent episodes and I was admitted to a large teaching hospital. The doctor could not find out why the episodes were occurring.
ER NIGHTMARES AND ADMISSIONS TO ANYWHERE
After my pain crisis started, my abdominal spasms and nonstop vomiting for up to 48 hours started happening frequently.
Many times I was seen at the ER, the doctor would give me a small amount of pain medication and the doctor would load me up with anti-emetics. I have tremors because of an overdose of anti-emetics. The pain and vomiting didn't stop so they would insert a gastric tube and admit me to the hospital. After a few days I would be okay. I would always be told to follow up with my regular doctor. We "toured" several ER's and hospitals including large teaching hospitals. Every time, everything, still the same.
I tried to find a good board certified internist but had no luck. I would be assured they would hang in there with me until the end but my visits to doctors started resembling a series of bad dates. One bright young female doctor told me that she would do everything to find out what was wrong with me. On my next visit she suggested I might consider going to the Mayo clinic or Johns Hopkins. She ordered further tests and told me she would pursue her investigation.
LET'S GET RID OF HER FAST
The next scheduled visit the doctor came in the room and asked me why was I there. I explained I was there for a follow-up visit. She told me that she had made it clear to me that she could not help me and that she advised me to go to Johns Hopkins.
I was sick and weak at the time. My husband was with me and I started crying. Then she felt bad so she told me the "real" reason that she could not see me. She said she had presented my case to the other physicians in her group at their weekly meeting for case discussiona hoping they could give her some insight into my treatment. She was informed that I was a "complicated" case and I would increase liability for the practice and I must be dismissed. Case closed.
My spouse decided that we would go to a major teaching hospital for extensive evaluation. We decided to go to the Mayo clinic. So he put in for a self patient referral. We were instructed that we should be ready to spend at least a week going to their outpatient clinic because I would be seen by many doctors.
When we arrived at the clinic, they guided me to a doctor who was to be my "primary" physician. He would do the initial visit, set up appointments for different specialists and put all the information together after all tests were completed.
He was a nice guy. The doctor was very patient and listened to my long complicated history. He then informed me that he was an internist who specialized in cardiology.
He apologized that he couldn't help me and told me whatever was wrong with me probably wasn't in his field but he would refer me to the appropriate doctors. Then he asked me what kind of specialists I would like to be referred to. We thought that was HIS job. We rattled off specialists: neurologist, urologist, endocrinologist, GI doctor, rheumatologist, orthopedics, infectious disease specialist.
So, I left the office and I was called the next day by the secretary. She told me that I would have to stay for two weeks or more. I explained that my husband could only take off another week and I couldn't manage getting there by myself and she told me she would do what she could to schedule appointments. So I saw a variety of specialists, they did multiples tests and scans. Then I had a visit with my primary physician. He told us that something was indeed wrong with me. Some of my lab values and other tests were abnormal but no one could figure out what was going on.
He told us that we hadn't spent enough time to see all the specialists so he advised us to come back another week. We came back in a few months for another week. We talked to the primary physician again and asked if we could have an internist that specialized in a field closer to what was wrong with me. He patiently told us that they did not what was wrong with me so that would not do any good. New appointment were made for me. When I received the appointment schedule we noticed that were we basically seeing gi doctors again and a few other specialists. I went through more tasting where they repeated the same tests and did a few additional tests.
My primary care doctor told me my sed rate was elevated, some of my lab values were abnormal and it was clear that something was wrong with me. He advised us to come back for a few more weeks. We asked what was the point. He explained if a patient does self referral that they are seen by different levels of physicians. I had only completed the first rung of physicians and to see better specialists I would have to give more advanced notice and come back when they could see me. We asked why the physicians who saw me couldn't consult with the higher specialists. He told us things were just not done that way and if we weren't willing to put in more time an effort that they couldn't help us.
THE GODS SPEAK
After we came back from Mayo we were discouraged. We lived in a large metroplex and so we did research to find the top rated specialist in gastointerology and neurology.
The gastroenterologist was well known for his terrible bed side manner. Also he was well known for being a top specialist and the father of two famous offspring. Within the first five minutes of the conversation, he noted that I had been seen by a gi doctor who had been a student of his. He said that she was top notch because she excelled under his tutelage so I probably did not have a GI problem.
But, he assured me that if I had any GI problem, he would be the one to find it. He admitted me to the hospital and did an extensive work up. I had an abnormal lab value that was repeated three times by a painful procedure and it kept showing abnormal. I don't remember want it was. A resident asked if he could call in an endocrinologist. He told me, I think we have discovered your problem and it is an endocrine system problem. He called in a endocrinologist who stared at me for five minutes,said I didn't look like I had cushings syndrome so it wasn't an endocrine problem. The doctor came into the room and proclaimed that I absolutely did not have any gastrointestinal problems and he would swear on the Bible that it was so.
We decided to shift our focus from searching for diagnoses to finding treatment for symptoms. I tried every alternative therapy available. One time a Chinese doctor put glasses on my back that were wired to a magical machine that would send healing impulses into my body. Nothing happened. I saw physical therapists, a physiatrist, a homeopathic doctor who refused to treat me unless I got off my medication including my pain medication. Horrible experience: withdrawal and more pain. I had acupuncture, reflexology, every kind of ology there is.
PAIN IS A PAIN
I was finally referred to a pain management doctor who was an anesthesiologist. He was what is referred to as a needle Jockey. He did several epidurals and other procedures to try to relieve my pain. Everything he did provided me with no relief.
THE PAIN GAME
The needle Jockey referred me to my first "pain management doctor." Pain doctors are usually physicians who are board certified in anesthesiology and have decided to no longer be a hospital employee and go to greener fields practicing management of pain. Several types of therapy can be called upon to relieve pain when you go to see a pain management doctor in a large practice. In addition to medication which includes time released narcotics, and several other types of medications that have found to also relieve pain, the physician usually has physical, rehab, psychotherapy available for the patient.
Unfortunately, I was referred to a "pill mill" which is a doctor who has gone into pain management practice as a sideline to supplement income from his or her original specialty. The doctor who I saw was a psychiatrist who had recently gone into pain management. Our visits with him were short. He referred me to a pain therapist(psych.nurse) who I had to see every two weeks and I saw him once a month. He was the first doctor to put me on Fentanyl patches. I had the first real pain relief I had in years. The psych nurse who saw me spent most of her time covertly flirting with my spouse.
One day the doctor informed me that I must have further couples psychotherapy visits with his psych nurse. We informed him that our insurance didn't pay for such visits.
He said since we would not go for the visits he would no longer treat me. So he sent me on my way with a three month supply of Fentanyl patches.
SURFING THE WEB
We had used the internet frequently for research. Now I used the web to find a decent pain doctor. I found a good pain support group and someone recommended their own pain doctor.
DR JECKYLL AND MR. HYDE
That is how I met the doctor who would be my sole sanctuary for the next two years. He was an anesthesiologist who had decided to become board certified in pain management. He was very bright, spent a long time going over my case and over the years he did the best he could with his limited knowledge to find out what was wrong with me.
I hadn't thought too much about the DEA and how that agency might affect my life. I started to read horror stories about physician's offices being raided, practices closed, doctors on trial. Because the DEA had still not won the war on drugs they decided to find a softer target: Doctors who prescribed "controlled" narcotics. You've heard it all over the media. The abuse of prescription pain medicine has risen dramatically. The DEA took this information and used it to pry their way into physicians practices in which the doctor frequently prescribed pain medication.
Yes, there were some pill mills but those were shut down quickly. Government and state regulations for controlled substances had already started wrapping the doctor and the patient with increasing amounts of red tape that made it harder to fill their prescriptions.
They set their sights on small rural practices in which GP doctors were prescribing certain amounts of controlled substances. At first the doctors thought what did they have to fear? They carefully screened their patients for signs of drug seeking behaviors and wrote prescriptions responsibly. What the doctor had no control of was patients who unknown to the doctor sold their meds, or doctor shopped for multiple pain med prescriptions. Also some patients did not share their history of depression or substance abuse.
Because of governmental regulations already in place, the DEA was able to use these regulations in ways not intended and find loop holes so they could gather prescribing
information and do back ground checks on certain patients.
If they found patients who had a history of drug related offenses or any information that might make them vulnerable to questioning by the authorities, they would bring these people in for questioning. They would threaten punishment for activities and then offer clemency if these patients would "rat" on their physicians.
Thus began routine raiding of physician's offices for narcotic violations. They would produce "evidence" to the doctor and usually offer him or her a plea deal if he or she would confess to a lesser charge.
Some physicians refused to buckle under and they were brought to trial. There was plenty of media coverage for cases in which the district attorney's office decided to prosecute doctors on felony drug charges.
It was no surprise that other doctors became alarmed and began instituting "guidelines" that patients must follow if they wanted to remain under their doctor's care. First came the pain management contract. This was a document that contained a brief government approved policy on pain management and spelled out what the patient must do or not do if they were to remain a patient. Who was the consumer and who was the consumed?
By signing pain contracts, patients agreed to regular drug screening, promised to inform their doctor when they saw any other physicians and that the doctor could terminate the patient doctor relationship for any violation of the rules. The doctors explained that urinalysis and blood tests would be performed at random times to assure that the patient was taking their medication and that were not taking any other controlled substance or recreational drug for which they had not informed the doctor.
Also if you were discharged by a pain management doctor for any reason that would be a big black mark on your book. When you tried to make an appointment with another pain management physician, they always would ask for previous records. If you had been discharged by a doctor then they refused to see you.
Fortunately, for me when I first saw my pain management doctor things hadn't gotten out of control regarding the DEA so when I told my pain management doctor that I stopped seeing my previous doctor due to lack of insurance coverage, he did not question me further.
As I said, this doctor tried his best to find out what was wrong with me. He would engage my spouse in long conversations regarding research. Things usually went okay but I learned the hard way to do not make an appointment with the doctor in the morning. He had diabetes and his blood sugar was always low in the morning which meant he was extremely irritable. Also, I learned I must always take my spouse with me. I suspected my doctor was a misogynist because of comments he made to female personnel but I didn't realize that it affected his attitude towards his patients.
The two times I showed up without my husband were disastrous visits. He was very irritable and dismissive and threatened to reduce my pain medication. The second time he told me that I had to do a urine test for drug testing. He sent me out to the lobby and I waited and waited for three hours. Periodically, I would periodically wake the receptionist out of her semi coma and ask when I would be seen. She would curtly instruct me to take a seat. Finally, the nurse came to lock the front door at the end of the day. She asked me what I was doing there and I explained so she did the urine test.
When I told the doctor what had happened during my last visit he apologized (I remembered to bring my husband.)
My doctor also put on another hat and acted as my primary care physician. He prescribed me medication for my abdominal spasms, UTI's etc.
The only thing he required was that I must undergo an epidural injection every six months. Patients must maintain their profitability.
FINDINGS ON THE EAST COAST
My spouse worked in telecom and after 9/11 the telecom bubble burst. He could no longer find work in his area of expertise After being unemployed for an extended period, he was offered a job in New England.
When we first arrived in New England it looked like business as usual for the professional patient. I tried to find a pain management doctor but discovered that many pain management practices in teaching hospitals no longer treated chronic pain patients. They advised me to go to a GP which I did. The GP agreed to give me a few months supply of my pain medicine but advised me to seek out another pain doctor.
I did find another local doctor that was adequate for the time being. My spouse did some research and found out about a neuroendocrinologist in New York that might be able to help me with some of my long list of symptoms.
I talked to him for about an hour. Just by my history, he surmised that I was having abdominal migraines. He put me on injectable Imitrex and the vomiting episodes became much better. He also referred me to a well known pain management clinic in New York.
It is there I met my favorite doctor. Dugie Slomboly. He is a short young Polish man who recently became a father. He is brilliant and he does what so many other doctors have been able to do which is think. He did some diagnostic tests and on my third visit told me that I had RSD or CRPS, complex regional pain syndrome. We mentioned that possibility to my former pain doctor but he told me that I did not have RSD because RSD only affects the limbs.
I understand why he thought that because most of the literature refers to the limbs but RSD can happen in other areas of the body. The same mechanism is at work just in a different place.
He has worked with me to achieve optimal pain relief. He tells me about new medications and research regarding chronic pain. He also has a background in neurology and tells me about neurological research. He is what I think a doctor should be, a patient advocate.
Also, I saw an endocrinologist at Mass. General and he discovered I had Celiac Sprue which is a disorder in which the person can not tolerate anything with gluten in it.
This meant wheat, barely and oats were out of my diet. We are very careful to make sure that I have a true gluten free diet. My spouse prepares my meals and knows everything that goes into them.
We are careful about buying prepackaged gluten products because cross contamination can occur. Some places that make gluten free food use machines that have been used to make food with gluten.
For the next four years, I went on with my life. I became progressively more disabled because my pain increased and I started having some degenerative disc disease which is not operable. I am only able to walk very short distances because of severe back pain and balance problems.
For the last five years ,I had been having a variety of neurological symptoms. My head falls down to the right and I think it is still upright. Also I became apathetic about attending to activities of daily living. One neurologist told me I had seizures, another said I didn't. A few years ago I developed a deep vein thrombosis which went from the level of my abdominal aorta all the way down to my foot. I was in the hospital for a month and had a severe thrombolytic reaction to Heparin.
Due to increased balance problems, I broke my wrist. I had a couple of hospital admissions for neurological symptoms but no one could figure out what was going on.
THE DARK HORSE
My spouse took me to the emergency room about a year ago because I was having symptoms that were worrisome for a possible stroke. I was admitted to the hospital and the neurologist could not figure out what was going on. My spouse asked the doctor to order an MRI of the brain.
It was then we discovered that I had Picks disease or FTD. It is a degenerative brain disease which is fatal. I have been having symptoms for five years. I will talk more about living with my illness in another post.