Tag Archives: diagnosis

Self Diagnosis

One of the most frustrating things for a doctor is when a patient walks in handing them the diagnosis they believe they have. They’ve been online and they’ve compared all their symptoms, and they even know what treatment they need. They just need the prescription.Now I am all for patients educating themselves and being proactive about their health, but there are a couple things that are wrong with this situation.

First, not all sources are accurate or up to date. There is a lot of information on the web, some of it is good, some of it is not. Some articles are simply just someone’s opinion and have no study behind it. In truth, as a physician there are only a few sources I trust. I will share that in a later post, as well what a real clinical study is.

The second is that it creates a dangerous bias. The patient becomes so adamant about what they believe is their diagnosis that they are unwilling to hear anything else. So what can happen is the patients start telling their symptoms, guiding their doctor to believe what they think they have. They inadvertently leave out other important details or exaggerate other details. The doctor now has inaccurate information, and sadly sometimes doesn’t dig any deeper because the patient has already handed them a lot of information that does fit a diagnosis.

Take for instance Patient A. She has been having some abdominal pain for the past few days. When she does her search online she notices that her symptoms are similar to those who have gallbladder infection. The pain isn’t quite upper right quadrant but it’s close. She has had some vomiting and diarrhea. She thinks she had a fever but she didn’t really check. She thinks maybe the pain occurs after she eats. She fails to state that her urine has been smelling a little funny and cloudy, and that she has been peeing more frequently because she doesn’t see it as being important for her diagnosis of gallbladder infection. The doctor hears all symptoms leading to gallbladder infection, and treats it as such, missing the diagnosis of kidney infection.

I’m not saying that patients don’t know what’s wrong with them, because truthfully a lot of them do. We know our bodies.  But doctors have years of education, training, and experience that helps them determine your diagnosis. We know what questions to ask, and know what information is important and what information is not.If you are at the doctor’s anyway, might as well let them do their job and take advantage of their knowledge.

Ask the Doc- Do most doctors recognize fibromyalgia as a real illness?

So before I begin, here is a brief, informative article about what is fibromyalgia.
http://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Fibromyalgia/

Ok, to answer the question. If you would have asked me if fibromyalgia was real five years ago, I would have said “no”. Even after I was diagnosed with fibromyalgia, I still wasn’t sure if I believed it was a actual diagnosis. Now, after years of dealing with the disease, I understand fully that fibromyalgia is a true illness.

As far as my colleagues and other physicians go, I think they have differing opinions. Perhaps their views are dependent on their specialty or how much experience they have had with the disease. I think the majority of rheumatologists use the diagnosis easily, while the majority of PCP’s accept the diagnosis, but maybe are not as readily able to apply it.

Fibromyalgia is a chronic pain syndrome which was made as a diagnosis of exclusion, meaning when all other things were ruled out, then we could call it fibromyalgia. There are no definitive laboratory or imaging tests that are done to prove fibromyalgia, only tests to prove that it is not something else. Also fibromyalgia is often found with other diseases such as rheumatoid arthritis and lupus, which makes it unclear if it’s fibromyalgia or just a part of another disease.

There is non- laboratory diagnostic criteria, such as a certain number of 18 tender points on the body,same level pain for at least 3 months, and having no other disease to explain the symptoms. Although there is criteria, you don’t necessarily need to meet all the criteria to be diagnosed with fibromyalgia. Having diagnostic criteria for fibromyalgia supports the concept of fibromyalgia as a real disease.

There are many treatments for fibromyalgia depending on what symptoms a patient has. As the FDA approves drugs for the treatment of fibromyalgia, it does make it clearer in the mind of a physician that fibromyalgia is a true illness.

So in summary, I believe fibromyalgia to be a real illness, and as there is more information, more diagnostic and treatment methods, more doctors will feel comfortable in giving the diagnosis of fibromyalgia and treating patients accordingly.

Please continue to send me your questions, so I can answer them in a post. Also, please keep in mind I cannot give out any personal medical advice.

Risk vs benefit

It’s no secret that every treatment has a side affect. And sometimes it seems that we end having more treatment just to treat the side effects. It may see logical to just stop the offending drug, but there really is a lot more that goes into determining a treatment plan. Let me explain.

When it ones to determining a patient’s treatment a lot of things come into play. Allergies. Age. Other medical conditions. Medication interaction.Cost. Patient’s lifestyle and ability to be compliant. And then there comes side affects.

As physicians, we have to take into consideration everything to tailor the treatment for each individual. Let me illustrate. I had a 50 yr old African American who came in for a physical. When I looked at his blood pressure it was high. He begged me not to put him on medications, so I agreed that if he really changed his diet and started seriously exercising we could check in a month. A month later, no change. So I started him on a BP medication which studies had shown worked very well in the African American population. He called me a couple days later complaining of allergic reaction. We stopped the medication and I started him on a water pill. When he came in for another BP check, the blood pressure was normal but he complained of having to urinate every hour. He drives a truck for a living, so it was affecting his lifestyle. I sorted through options in my mind- this one isn’t covered by his insurance, this one isn’t good in people who have abnormal kidney function. Eventually we found a good option for him, but it wasn’t easy.

Most medications come with certain warning labels. May cause such and such. Don’t take if. As a physician we have to weigh out the risk and benefit. Is it worth giving a medication that may cause a bad side effect if we know it’s going to save a person’s life?

For instance, a lot of these lupus meds have some pretty bad side effects. Currently I am on a medication which lowered my white blood count and made me very anemic- both fairly dangerous things.Now this medication has been great up until that point. It was controlling my symptoms and it has been protecting my other organs, like my kidneys. I was finally able to get off long term steroids on this medication. The option to put me on a different medication was offered, but since it would involved coming in regularly to sit for a few hours for infusion, I opted out. It would take a toll at work. In the end, we decided to just lower my current dose a little, and keep a closer eye on the bloodwork.

Treatment is a very specialized art, and it involves a very delicate balance. Doctors and patients should work together on this, but at the end of the day you have to ask yourself “Is the risk worth the benefit?”

Ask the Doc- Why isn’t my doc willing to hear out my ideas?

A reader wrote in about a concern she had with her dermatologist. Her concern is that her current treatment is causing more harm than good. She has tried to show him research studies that she has found about the issue, but he won’t read them. She has also tried to show the study to her PCP, but hasn’t had any success.

In the doctor-patient relationship, I believe it is very important that there is trust between both parties. Patients need to trust their physician’s judgement and believe that their doctor is looking out for their best interest. But this does not mean they cannot seek further explanation or information.Patients have a right and responsibility to be involved in their care and treatment, and advocate for themselves.

As a physician, I believe in addressing my patient’s concerns, even if they may seem trivial. I may not always agree with what my patients are saying, but I believe it is worth considering, even if it is to simply show my patients that I respect and care about their feelings. Doctors have extensive medical knowledge and training which guides their decisions, but that doesn’t give us permission to completely dismiss our patient’s opinions.

Although we may be open to our patient’s ideas, sometimes our hands are tied. We have to be careful about going off- protocol, as does anyone in any other profession. There are standards of care in medicine, and treatment plans constructed around evidence-based medicine. Deterring from these standards can cause major issues for a physician.If there were to be a negative outcome due to a physician going off label, or denying the recommended treatment, the physician can be held liable as well as feel the guilt of going against consistently proven methods and causing damage.

I think the real issue here is that the reader does not feel that the dermatologist is being receptive of her concerns. I would encourage anyone in this situation to make their doctor aware that they feel their concerns are being ignored. We sometimes get so focused on the plan we have in our head, that we don’t realized we’ve stopped listening. If the physician is still not willing to listen, then I think it’s not a bad idea to get a second opinion. At the end of the day, the doctor and patient should work together as team with one goal- providing the best care for the patient.

Rachel’s story

Today I’d like to share Rachel’s story. These are her words just edited for grammar and spelling. Thank you Rachel for sharing your beautiful story. You truly are an amazing woman.

In 1999, my mother had a stroke at work. She was nurse. After her stroke, her body started to do strange things. The doctors did some tests but because lupus is so hard to diagnose it took a long time to finally come to the conclusion that it was lupus. She had a sore that they biopsied which was how they found out it was lupus And that is when the battle began.

She went from being a hard working nurse, wife, mother and grandmother to a woman who was so tired at times she could not get out of bed . She did not look sick so most people did not seem to think she was really sick. As time went by she was in and out of the hospital too many times to count. Her hair fell out, she had sores all over her skin, and she was always sick with something.The time came that she had to stop working. It was really sad because she loved her work so much. She loved helping sick people and it broke her heart to stop. But she had to.

After that things got even worse. Eight years into this disease, I started taking care of her and she had a basket of meds a mile high. She needed help with showering and dressing. I had to beg her to eat as she was losing weight fast. She was my mother and best friend and she had taken care of me my whole life.

In the end my stepfather came to me and said he was never home and I needed to either come live with them and take care of her or take her home with me, or we would put her in a nursing home. Although I worked, I brought her home. By this point, her mind was going because of the drugs and the illness, so I took care of her. I’m glad I did because I got to be a part of the last days of this amazing woman’s life. My body was hurting and I was tired but there was no time to think of me, only her and all I had to do.

Two years ago and after a twelve year long fight I held that amazing women’s hand as she took her last breath. She was free now. No more pain. No more lonely days as the world went on with their life while she could no longer keep up. Just peace for her which she had begged for. As much as it hurt I had to move on. She is in my heart always.

Now it was time to deal with my kidney’s problems that I believed I had gotten from my father. The doctors could not figure out why my kidneys where going bad. After almost three years, I got a sore. I had lupus as I was taking of my mother. I was suffering from the same thing, I just did not know it. After taking care of my mom with lupus, knowing what is to come, I am not sure if that is a blessing or a curse, but I would not change it for anything. My story is still being told but now her story has been told and may help someone else. God bless all who have this mysterious disease. I pray this helps someone as it helped me to tell it.

If anyone else has a special story that they would like posted, please send it to me, and I will edit and share it. You never know whose life you will touch.

My Story: Part 2- Bad News

I was in the Family Health Center when the call came in. I wasn’t with a patient at the moment, so I snuck outside into the warm summer air in the front of the building. My facial swelling had improved on the steroids and I was feeling better, so I didn’t think I had anything to worry about.

I heard it in his voice. Something was wrong. He told me that my bloodwork came back and it looked like I may have lupus or some other rheumatologic disease. He said I’d need further evaluation and gave me the number of a good rheumatologist he knew.  He was apologetic for the bad news but wished me good luck.

I ran back inside speechless, guarding the center’s fax machine as I waited for the papers that would deliver my fate.  I snatched up the warm papers as they flew out of the machine. Looking at the words and numbers on the page, nothing made sense to me. What are speckled antibodies? What I did understand  was the protein in my urine, and that made me nervous. I went to consult with my supervising physician, hoping for an explanation and reassurance, but none came. She told me solemnly ” I’m not sure what this means, but it doesn’t look good”.

I met with my rheumatologist the next week. I liked her instantly. She had a genuine and caring demeanor, and seemed very knowledgeable and thorough.  She asked me every question in the book, and examined me completely, looking inside my mouth, searching my skin for rashes, testing every joint and reflex, and combing her fingers through my hair.She said the labwork pointed to lupus, but she needed to do some confirmatory tests. She also said she needed to check a few other labs to rule out any other medical conditions. People with autoimmune diseases tend to get other autoimmune diseases.

The follow-up appointment came and I was beyond anxious. I had lupus and anti-phospholipid antibodies. She said my kidneys looked okay, but we would have to monitor them, and we may need to do a  kidney biopsy. We discussed my ability to conceive and carry a baby due to my anti-phospholipid antibodies which can cause blood clots. She informed me of the worrisome symptoms to look out for, and answered every single one of anxiety-laden questions. She was patient and devised a medical treatment plan for me, explaining that we may need to make changes until I am stable. But most importantly, she told me she was there for me and that we would get through this together. I may have had bad news, but I also had hope.