drmargaret

There are lots of various types of hallucinations. A hallucination is a sensory experience without the usual sensory cause. Hallucinations can be visual (seeing things not present), auditory (hearing things not present), tactile/kinesthetic (feeling things not present), olfactory (smelling things not present) and gustatory (tasting things not present).

The most common types of hallucinations have to do with sleep disturbance and are auditory or visual in nature and occur at the onset or ending of sleep. These experiences are disturbances in dream states. While the person believes they are awake when this occurs, their body is actually asleep and dreaming.

Some types of hallucinations are related to neurological disorders. These include tactile hallucinations and a specific type of auditory hallucination of music.

Hallucinations related to mental illness often relate to associated sleep disturbance. Depression and manic states include symptoms of significant sleep disturbance. Problems falling asleep, staying asleep, and waking several hours too early can contribute to hallucinatory phenomena. Medications designed to help improve the loss of energy associated with depression incorrectly taken at bedtime will worsen the sleep disturbance and worsen the hallucinations. Maintaining good sleep hygiene will go a long way to improving hallucinations that are the result of sleep disturbance.

Many people can experience hallucinations as a side effect of medication. Antibiotics, pain killers, and medications that are sedating can cause hallucinations. Substance abuse causes hallucinations in several ways. The actual substance can produce hallucinations. The substance can disturb sleep. And when the substance wears off the withdrawal can cause hallucinations. Alcohol can cause visual, auditory and tactile hallucinations. Seeing pink elephants are likely occurring at the onset of sleep or waking. Hearing your name called or hearing whispers. Getting confused and having the sensation of bugs on skin or snakes wrapping around your arms or legs is a late stage of nerve problems from alcohol abuse and alcohol withdrawal.

There’s a difference between hallucinations and illusions. Illusions are things you experience that seem outside of you but you are producing. They are not a sensory experience. These are dissociated experiences. Traumatic events produce problems encoding cohesive memory. People feel unreal at the time of the event or outside themselves. When similar things trigger the memory of the event the person has an illusion. They may replay the event again in it’s entirety. This is a flashback. They may have only parts of the visual picture as a flash. This is a visual illusion. They may have only the auditory soundtrack. This is an auditory illusion. They may hear a commentary on the event. They may hear conversations of others present at the event. These are fragments of the event that occurred that haven’t been adequately processed. By identifying the triggers for the illusions, the information from the trauma can be more adequately processed.

Some traumatic events cause head injury. Often people hit the back or front of their head. The olfactory bulb which controls smell and 85% of the sense of taste sits right over the bridge of the nose. If this area is damaged by an impact either being hit in the face or head from the front, or hit in the head in the back and having the brain bounce to the front can damage this area. Smell and taste hallucinations can occur as a result of impact. Nerves heal over a long period of time. The sense of smell and taste may return to normal years after the accident or injury.

Infections especially dental or sinus infections can cause inflammation which disturbs the sense of taste and smell causing hallucinations or illusions.

Hallucinations associated with mental illness have unusual qualities to them. There are other symptoms that go along with the hallucinations that correlate with the illness. Delusional material goes along with schizophrenia. Sad mood goes along with depressive psychosis. Grandiosity goes along with manic psychosis.

Extrasensory experiences are not hallucinations although they may include delusional material. Seeing ghosts or dead people are often part of a cultural experience. These events may be experienced by a number of people who report the same phenomena. A trained psychologist or psychiatrist should be able to evaluate the experience and differentiate one phenomena from another.

For most people, hallucinations are an annoying or scary event that quickly passes. Large percentages of people have a single experience of a hallucination. It’s common. Hallucinations that interfere with daily life and interpersonal relationships should be professionally evaluated.

I dashed in to the local mall this weekend to see about picking up a children’s chemistry set for my niece’s 7th birthday coming up at a new store with old (1950-1960’s) toys in it. Then I found out how much science has been dumbed down for children since I was a kid. So I gave up on the store. I went online and downloaded a 1960’s pdf file of the “Golden Book of Chemistry Experiments: How to set up a home laboratory” http://xenon.arcticus.com/retro-science-books-golden-book-chemistry-experiments-and-mr-wizards-400-experiments-science and purchased a CM2000 chemistry set also on line. I did that at work up in Chico. So I had the photo copied book and I wanted it bound. I took it to the Kinko’s in Chico for that, and my medical assistant wanted a copy as well. So I made two sets. The guy at Kinko’s mistook me for a terrorist. Which is really strange in Chico. I would have thought his first thought was a stay-at-home meth dealer. So he asked me directly if the book he was binding talked about making bombs. “Of course. It’s a chemistry book.” I said. “I promise to do a good job on this.” He said, starting to sweat. So I clarified-”It’s an out of print elementary school chemistry book from the 1960’s for my niece’s 7th birthday in addition to the chemistry set I’m giving her.” Hopefully that averted the phone call to Homeland Security. But just in case, I alerted the hotel where I was staying and my husband who would probably know about that kind of thing before I would. So far no one has paid me a visit to see how I’m subverting this youth. This is the same chemistry book my kid brother and I had when we were growing up and he did make an attempt to blow stuff up at home. But he got more of a charge (excuse the pun) out of his “experiments” with electricity and setting stuff on fire, leading to his career in construction and electronic repair. But he still maintained an interest in chemistry and is a licensed pharmacist. Cliff suggested we put in his field manual on “How to make two ingredient explosives out of household chemicals” but I thought he should supervise that part. He did put her on the PlayStation3 and let her crash her car into things in one of the driving games. She had so much fun that she decided to start her mother’s car when they were leaving. Prompting her mother to cut her goodbyes short with a “What the hell are you doing?” shreek. So we considered one of those gasoline/electrical cars for her, but thought her driving on video left much to be desired, and went with the chemistry set instead. If you should see a small mushroom cloud coming up from Burbank in the next few weeks you’ll know she got to working on setting up her lab without reading the precautions.

My husband declares that cats are evil and if they had middle fingers they would be sure to flip you off with them. I, on the other hand, loved cats, trained cats, and had cats until I met my husband and was introduced to the toothy monsters he so adores that think of cats as appetizers to devour prior to their dog food. I used to spend so much time with my cats that they would learn my speech and would mimic my inflections and respond back. They brought me “presents” some of which were only partially eaten before hand and some of which were still alive and quaking in terror.

I had two amazing cats in my life. Although to say you “have a cat” is to equate them to dogs. Cats pick you. Heather, a chocolate point Siamese certainly picked me. She came to my apartment door and catterwalled until I let her inside to stay. She walked by the window and sunned herself on the inside ledge when I was going to graduate school. She greeted me with partial phrases of “what what,” “Cat food,” and “out.” When I moved to my house she learned to ring the doorbell to be let in. She’d catch birds by scaling the screen door and grabbing them through the lattice over the patio. She’d walk in a heel with me around the neighborhood. She’d turn the lights on when it got dark. She’d meow to me from the house being constructed behind mine when she could see me in their upstairs unfinished bedroom. She lived a long life with me and finally, when the coyote population was getting overly bold, she was given to a coworker whom she promptly left for an elderly woman in Pomona, where she was happy for the remainder of her days.

My other amazing cat was an Abyssinian. Clara, was truly quite ugly as a kitten. But she grew up to be very pretty. She liked the shower and the sink provided she wasn’t getting submerged. She could jump 5 feet straight off the ground and catch birds in flight. She knew the house and came when called. She had her rounds in the morning and evening when she would go to other houses and visit her cat and people friends. People knew her but didn’t know she was my cat. Occasionally someone would take her in for a day or two then she’d return always fat and happy. She lived to be 6 then disappeared. She was truly a joy.

I’ve written a memoir about my life and am searching for a literary agent. The first chapter can be found on AuthorLink.com. The book “Name” documents growing up in Burbank, California in the 1950’s to 1970’s. My adoptive mother was schizophrenic and untreated. My adoptive father was oblivious to the child abuse going on in the home (there were no child abuse laws that would have been applicable until 1974 in California). The book details out my search for my biological family and my eventual reunification and taking back my name legally. It’s similar to Angela’s Ashes by Frank McCort and Running with Scissors by Augusten Burroughs.

A recent reader suggested I post a warning about the book. She got half way through and her lung collapsed and she needed a chest tube put in. While I know my book can take someone’s breath away, I don’t think most people will need a chest tube. If you’d like to comment please email me at MDonohuePhD@GMail.com.

Baxter was our 9 year old Dalmatian. We had him since he was a puppy of almost a year old. We got him from the Glendale pound. He had been raised with cats. He had stomach problems and had already had some type of intestinal surgery. He was passive. He talked to me when I came home. I have no idea what he said but it was a long conversation. He died two days ago of complications of interstitial lung disease. It’s an autoimmune disorder. He was our third of four Dalmatians. Zoey, our first, died in 2001. Archie was given back to Dalmatian Rescue after he bit my husband. Cinnamon remains. We aren’t getting any more dogs. Cinnamon missed Baxter for less than 24 hours. She doesn’t respond to his name and doesn’t look for him. She’s now the dog in charge of the house. It’s her rightful place. She’s thrilled.

Baxter had been incredibly sick for about four days prior to our decision to have him put down. He was hallucinating. His kidneys enlarged. He had a prostate infection. He had an enlarged heart and spleen. He was vomiting frequently. Although he could have some treatment to ease his suffering, it was just the beginning of a series of infections and illnesses he would have had to endure. We decided it wasn’t good for him. His death was peaceful. He had lost 15 pounds in 2 days and was down to 85 pounds when he died. He had developed an autoimmune thyroid disorder with no functioning thyroid gland. He had problems breathing and coughed and wheezed all day long despite medication. We’ll get his ashes back in a few days and he’ll be buried in the garden. We’ll miss him for much longer than Cinnamon.

First let me post an update. My husband had his other hip replaced and is doing as well as can be expected following six surgeries to the area. The entire last year was rough on him. He’s fortunately of a strong constitution and coping well.

I’ve had asthma all my life. I got a bit better between when I was 14 and when I was 24, and then it returned with a vengeance. Last year I had a lot of problems with breathing. I was tried on about 17 different medications including steroids. Ultimately nothing worked. So all the medications were discontinued and I had a CT scan of my lungs, then an MRI scan. It turns out I have an unusual lung disease called sarcoidosis. I’ve probably had it since I was in my early 20’s when my “asthma” returned. It’s late in the course of the illness and I’ve already tried and failed all of the conventional treatments. I did try an experimental treatment for about 6 months and eventually my doctors conflicted with the research team on the treatment and, in consultation with both sides, I elected to stop treatment. What that means is that eventually my lungs will not be able to adequately supply oxygen to my body. I’ll probably end up with death from a heart attack or complications of infection rather than oxygen deprivation.

So I changed from a treatment model of care to a palliative care model. Treatment models in medicine involve the idea of working towards recuperation, or cure of an illness and a return to a prior baseline level of functioning. A palliative care model involves comfort. The goal is making symptoms tolerable with no goal of recuperation or cure. It’s difficult for physicians to switch from their normal treatment role to a palliative care role. It is the model used for all hospice care and all end of life care in general. It’s been a wonderful transition for me. No longer do I have a drawer full of medications and pill containers to take literally around the clock with alarms being set for every 6 hour intervals, but for the most part I’m on no medications except for those needed temporarily if I need some increased comfort.

I’m familiar with this model of treatment because I used to see people in hospice settings and I’ve had friends who have had terminal illnesses. A psychologist friend of mine with end stage cancer elected to continue chemotherapy and radiation as a last ditch effort, but then stopped all work and “stopped churning money.” The pressure she had put on herself to continue to attempt to manage a practice and run a home was a bit much. Her illness offered her the opportunity to pair down, scale back and only focus on what was most important. I spoke with her a few weeks prior to her death. She was happy. Her family was around. She wasn’t in pain. She was relaxed. I talked with a psychologist who was going blind from a brain tumor. He was just starting to switch from treatment to a palliative care model and was extremely bitter about the fact that there wasn’t anything else that could be done for him. He was trying to elicit sympathy from other people. He ended up driving people away. I lamented to him that it’s a shame that the “Make-A-Wish Foundation” that does such wonderful work with children with life-threatening illnesses doesn’t have the same service for adults. He could ask for some super model to visit, or engage in some fantasy sports camp, or get that one last car, pet, travel experience, life experience thing prior to the end. That seemed to give him a different perspective. He thought of many things he could do with the time he had left and elected to have meaning rather than to be bitter. Other people decide to maintain in treatment mode through to the end of their lives. It lets them think they are “doing something” and for some, it gives them hope.

I have lots of hope for the future. I just don’t want to spend my time chasing down treatments that sap the life out of me and do nothing to reduce my symptoms. So for the time I have left I want meaning. I’m intending to work as long as I’m physically able to. I’m one of those people that on my death bed will say “Gee, I could have spent more time at the office.” My husband is able to come to work with me at times so I see him often. Our dogs are both old and not in good health themselves and we just won’t replace them when their time comes. I’m also not concerned about big issues like politics, or the economy, or other things I won’t conceivably have an impact on in my lifetime. Yes I’ll recycle and won’t waste energy, but a lot of things are just not all that important. They aren’t worth my time. Other things have become more important.

My mother found out she had about a year to live. She had serious, untreatable heart disease. Given the extent of her illness she had a choice: she could try some treatments that would likely have killed her or she could do whatever she wanted with the rest of her life. She elected to discontinue all treatment towards cure and elected a palliative care model. She maintained some medical treatment and decided to spend the remaining few months of her life teaching English in Hunan, China. She sent me email of a regular basis and I heard from the Chinese consulate when she died there. She had a wonderful last year. Probably one of the best in her life.

My husband went to the hospital to get his second hip replaced. The surgery went well and he was sent home. Two weeks after the surgery he developed signs of a wound infection. It cultured positive to MRSA-Methicillin Resistant Staphlocaucus Aureus. There are a couple of infections that are worse than MRSA, but only a couple. Fortunately he had the hospital acquired form. The bacteria occurs in hospitals because people get resistant forms of bacteria due to antibiotic use and health care staff are not diligent about sanitary procedures and isolation techniques. His physicians removed his titanium hip and replaced it with a plastic spacer. He underwent three additional surgeries to clean out the infection. The body undergoes several changes as a result of infection. All inflammatory markers elevate. Blood glucose elevates and the risk for heart attack and stroke increase with inflammation, elevation in blood pressure and blood sugar. My husband’s markers showed him to be near death at the time of his admission. Fortunately he survived and did well on IV antibiotics. He lost about a 55 pounds while he was in the hospital.

We had gone to the hospital as an emergency. Leaving the house quickly. Unfortunately we left some soiled bandages on the couch and our two Dalmations shreaded them all over the house. Only a few bacteria are able to transfer from humans to dogs. MRSA is one of those infections. Both dogs ended up contracting the infection. It took weeks of antibiotics, treatment with iodized silver, and eventually antibiotics administered intranasally before the dogs tested negative. My thanks to the Bella Moss Foundation in England for their information and support during that difficult time.

My husband contracted an additional infection from being on IV antibiotics. Clostridium Difficile is a bacteria that invades the GI tract after normal bacterial flora is destroyed or it can occur as a result of ineffective sanitization procedures. The bacteria produce spores that can live on surfaces for up to 70 days. Washing surfaces with alcohol gel is not effective, but soap and hot water is effective in killing the bacteria as is bleach.

Eventually my husband was released home the Friday after Thanksgiving. The VA hospital said he was no longer contagious. I didn’t think he looked well when he arrived home. Fortunately we followed universal precautions. He tested positive for Clostridium difficile on Monday. He has not yet had surgery to eplace the titanium rod in his hip. He still has a spacer. With ongoing infection, he remains at heightened risk for heart attack and stroke.

I’m not writing this to document my personal family difficulties. I’m writing to let other people know what to expect from hospitals and physicians. When you go to a hospital, wash your hands with soap and hot water. Expect the physician and hospital staff to wear gloves or wash their hands prior to examination and following examination. If you do not observe your doctor or medical staff washing their hands request they wear gloves.

Initial signs of infection include elevated or subnormal temperatures (99.1 or higher or 98.1 or lower), elevated blood glucose with readings over 200, and elevated blood pressure with readings over 140/80. It’s possible to have abnormal vital signs and not have an infection. But the changes in vital signs are the earliest signs of infection that can be documented. As infection progresses there will be changes in lab chemistries. Leucocytes will elevate above normal, an inflammatory marker called C-reative protein will elevate (normally it’s less than 1), the sedimentation rate will elevate. Eventually there will be an actual fever with a temperature over 101. As the immune system becomes compromised organs shut down with resulting kidney problems and respiratory difficulties. Death results from cardiac failure, pneumonia, renal failure, or wasting.

There are a couple of infections which require urgent treatment. MRSA, VRSA (Vancomycin resistant Staph Aureus), NF- necrotizing fasciitis, also known as “the flesh eating bug,” are all infections that require urgent treatment. Any of these infections can cause life threatening complications starting in a matter of hours or days. Almost all infections can be prevented by good health care provider hygiene, regular hand washing, and normal cleaning of surfaces that come into contact with potentially contaminated material.

Hopefully in the case of my husband everything will eventually turn out well, he will get a new hip and his recovery from that surgery will go smoothly. My you all have a good 2008.

There is a lot of confusion about the concept of reinforcement for people not in the field of psychology. Reinforcement is doing something that causes a behavior to increase. This isn’t restricted to positive reinforcement. It includes negative reinforcement.

A small boy was in my office with his even younger sister and their mother. The mother wasn’t able to get either child to sit in a chair. The mother wasn’t issuing commands or reinforcing commands. It was dangerous for the children to run out of the office or to climb up onto chairs and stand on them. So I intervened.

I commanded the children to sit down in their chairs. The boy sat down. I said “good.” The girl ran over to the door. I picked the girl up and put her in the chair and said “sit here.” The boy started getting up from the chair and I stood up and he sat back down. So did I.

Reinforcement takes place prior to a behavior occuring. It increases the likelihood that the behavior will increase. Saying “good” is positive reinforcement. Standing up by me, is a negative reinforcer. It also increases the likelihood that the child will sit down. It doesn’t involve praise or rewards. It involves my doing something the child wants to stop, like me coming over to him and putting him in the chair. It happens before he sits. It increases the likelihood of his sitting.

Children reinforce their parents as well. The girl started screaming. The mother reached for her. I prevented the mother from removing the child from the chair. The mother complained that the child screamed often. Of course she did. Every time she screamed she got stuff. If that happened at my work I’d scream all the time too. Initially, without getting her usual scream based reward, the girl screamed more and louder. When it didn’t work, she sat crying softly, but she sat. The boy sat without crying. He got to play with toys in the office. I gave the girl a couple of plastic blocks to play with as she remained seated. Eventually the mother couldn’t tolerate the child sitting down and crying and felt it was necessary to pick the girl up. She told me the girl couldn’t remain sitting in a chair. I pointed that the child had been seated for almost five minutes and the boy was seated for almost ten minutes. There was no problem in getting either child to sit down. There was a problem with getting them to stay seated for long periods of time, because they hadn’t practiced the behavior. That would require more training.

The mother put the children on the floor and they ran around again. An office assistant came into the office and told the children to sit down. Both children sat down on his command. They understood and could follow directions for this stranger. They had been trained by their mother not to follow her directions. She would need to change her behavior and reinforce commands to get the children to listen to her.

Negative reinforcement is not the same as punishment. Punishment happens after a behavior has occurred. It’s a slap on a wrist, a removal of some wanted item, a critical remark, the dreaded word “no.” It happens after the behavior has already taken place. It is very ineffective at changing behavior because it happens too late. Punishment increases lying and sneaky behavior. People attempt to avoid punishment. Because the behavior has already occurred and can’t be undone the only thing to do is to deny the behavior or change the evidence.

Reinforcement trains behaviors that are desired. It works.

Cinnamon decided that several stuffed plush toys needed to die today. I have no idea what these inanimate objects could possibly have done to offend this eight year old Dalmation. Clearly the green frog was the worst offender. Perhaps it was it’s hiding out under the couch. Perhaps it was that our other Dalmation, Baxter, got it to squeek out of turn. I noticed the homicide when the frog flew across the room with Cinnamon growling at it. She then tossed it back and ran after it again. When she finally caught up with it she had to bite it numerous times. If stuffing started coming out she put a paw on it and started pulling out the rest of the stuffing.

Normally, Cinnamon kills her stuffed toys heads first. There are several toys laying around in disaray missing eyes and mouths. I understand that sometimes when cats or birds wander near the sliding glass door and she can’t get to them, that something needs to be sacrificed and a plush toy fulfills that need. I understand that when Baxter takes her coveted space on the bed, that something needs to help her manage that frustration. I just don’t know why she chooses the frog or the chipmunk as opposed to the purple elephant, the animals that make animal sounds, the cats, the birds, or the hundreds of other plush animals she has available to destroy. What makes the frog or the chipmunk so special?

I got her a couple of cat toys that look like wildlife, some mice and rats made in suede, some toys with openings for catnip that were easy to add squeekers to. Baxter found them amusing for a day or so. Cinnamon wasn’t interested except when Baxter wanted them.

The best place I found stuffed animals has been at Albertson’s market. These are children’s toys with a sack of pellets in them that can easily be removed and replaced with squeekers. I’ve gotten several cats and dogs from there for about $5.00 each. Comparable plush toys at large pet stores range from $10.00 to $12.00. I also found out that Build-A-Bear Company sells the types of squeekers that make music or noises separately. I can add a variety of squeekers. Of course, with a sewing machine I can make plush toys from remnant fabrics for the dogs as well.

Plush toys can survive a kill or two. More than three total kills or a full head or face removal and it gets to be too much for a simple repair. The frog is starting to bite the dust. It won’t be too long for the chipmunk.

Tonight Cinnamon is asleep with her paw on the frog. It’s missing part of it’s face. She’s very happy and running in her dreams. Maybe she’s still chasing the frog.

One of the most stressful things that can happen to someone is to get sick, go to a doctor, and have the doctor not be able to determine what is wrong with you. As the illness continues and worsens the physician can often get overwhelmed followed by multiple referrals to specialists or a referral to a mental health practitioner.

I come from a family with unusual medical conditions. My first atypical illness literally began at birth and resulted in my first adoption being rescinded and a week’s stay in a neonatal intensive care unit. Six months later and weighing a pound less than my birth weight I was pronounced fit for adoption and sent home with an unsuspecting couple.

Over my lifetime I’ve had four illnesses which have gone undiagnosed for months to years. The most recent event started January 13, 2007 and I was finally diagnosed on June 7, 2007 almost six months later.

What I want to talk about in this post is how anyone can cope when faced with this type of situation in themselves or in a loved one. The first thing to do when a disease has no diagnosis after a couple of weeks or so and is not responding to systematic treatment, is to put together a list of all the symptoms of the illness for the doctor. Put this on the left half of a piece of paper and give each symptom a few lines of blank space under it. On the right side note what makes that symptom better or worse. Get copies of every laboratory test done and get a basic medical book such as the Merck Manual and look up every laboratory abnormality noted in the tests. Make a list of every medication tried, the dose of the medication used, and the length of time of the trial. This list should include every single medication prescribed, and foods used as medicine, any herbs, any vitamins, any supplements, and anything you are “borrowing” from friends, family or buying on the street including any illegal drugs, tobacco, beer, wine, hard liquor. To this list add foods such as grapefruit, onion, garlic, ginger, and orange juice. These foods can have an impact on the effectiveness of medication. A food diary, of everything consumed, may also be helpful.

Start with the symptom list. On a fresh piece of paper list every illness you can find that has that symptom associated with it. You can use the computer to search by symptom and disease. Make a list of all diseases associated with the symptoms for all the symptoms.

Move to the medical test abnormalities. On a fresh piece of paper list all the abnormalities and all diseases associated with the symptoms. Do this for all the abnormal test results.

Move to the medications, over-the-counter products and foods. Put down all the side effects known to occur with the products. Most medications come with patient hand-outs to explain side effects. The Physician’s Desk Reference or the Pill Bible, or The Physician’s Desk Reference for Herbs or Supplements can assist.

Since you now have lots of information, start looking for diseases that are repeated in the lists. When I do this with patients I find it helpful to have them get a package of different colored highlighters. Highlight each disease with a specific color when it occurs three times in the list.

When these lists are created there is too much information and most of the information will end up being irrelevant. As more tests are being done or more treatments are being tried, it gets easier to see specific diseases that are either being ruled out or starting to be ruled in by how often they are showing up on the lists.

I usually start this process when I’ve been sick for at least a couple of months or the symptoms are severely worsening. While I’m doing this process I also get involved in either chronic illness chat rooms or psychological support chat rooms. This is an anxiety producing process. People going through this feel very nervous. Inevitably there are fatal illnesses and not treatable illnesses or poorly understood illnesses on the lists. Reading about difficult and painful ways of dying can be depressing. Psychological support can be very helpful during this time. A visit to a professional psychologist may also be able to help.

When you come up with multiple lists that have a specific disease or two, then you would want to ask your treating doctor about testing or treating you for that specific disease or two. You can choose to share your lists with your physician or simply put down all the symptoms, lab tests, medications, foods that lead you to come up with the disease you are interested in investigating further.

Let’s say you have neck pain. It gets worse when you exercise. It gets better when you lie down, but not when you are completely flat, just sort of reclining. The neck pain is accompanied by chest pain or a feeling of discomfort sometimes but not all the time. The first time you saw the doctor, they thought you might have strained a muscle and suggested some over-the counter pain medication. Over time, nothing has improved and the chest pain now is moving more into the center of your back and you need to lie down more often. Lab tests show your blood pressure is elevated, you have elevated cholesterol, you have some problems with inflammation. You have no problems with glucose. The doctor ran a special test to check for arthritis and did an x-ray. Those came back normal. Your list showed that neck, back and chest pain, elevated blood pressure, and elevated cholesterol are all consistent with heart problems. Okay, time to go back to your doctor to ask about testing for heart problems. If those tests show heart problems you can get treatment. If not, you can go back to your lists. Doing this process is likely to come up with a diagnosis eventually in conjunction with your doctor.

Now a word about doctors. There are some doctors who think that they need to manage the illness, treatment, and understanding themselves without patient input. If you have a doctor that will not assist you in helping to get a firm diagnosis, or work with you on developing a treatment plan, you may want to consider getting a different physician.

This strategy is helpful in working with many rare, unusual, or hard to diagnose illnesses.

As for me, my condition should improve with treatment and may resolve completely. My condition is unusual for someone my age, or my ethnic background so it hadn’t been considered by my doctor. The symptoms clearly pointed to a diagnosis. It was just a matter of ruling out most of the common place things I was more likely to have, then moving on to the weird but possible illnesses. It was then that the illness showed in tests. The research I did also allowed me to understand possible treatments. I brought in 12 pages of treatment protocol for my doctor and he thought that treatment might prove very effective. I started treatment last week.