Do you ever watch those medical dramas on television and think, “Why can’t my doctor be like that?”
‘House’, ‘The Good Doctor’, ‘Holby City’ – the doctors see their patients and somehow figure everything out in no time at all. Even the afternoon drama, ‘Doctors’, set in a UK GP practice, can do it.
They have time for their patients. They send their patients for every possible test. No waiting lists. No time wasted. The doctors search and search and don’t stop searching until they find an exact diagnosis.
But it’s not reality. The reality is nothing like that. It often feels as though some doctors don’t even try to help. Many doctors do try. They go out of their way to help their patients. But even then, with the best will in the world, an accurate diagnosis can be hard to come by.
The Reality of Trying to get a Diagnosis
I had over 20 years of facial pain before getting a diagnosis of trigeminal neuralgia. My story is not unique. I’ve heard of people who have struggled for years to get a diagnosis for various conditions.
Many people live with medical mysteries and the reality is waiting, waiting and more waiting. And very often, they get no answers. People can be dealing with horrific symptoms, but there’s no Dr. House around to figure out a diagnosis.
I asked the chronic illness community on Twitter about their experiences.
This is a selection of responses. As you’ll see, it can take years to get a diagnosis, and even when they do, it might be questioned by other doctors or changed at a later date.
I had 3 doctors diagnose me for fibromyalgia. Two of my current doctors haven’t concluded that is accurate. So, it’s still being debated after 10 years.
I had been searching for a diagnosis for 6 years and previously misdiagnosed with lupus, fibromyalgia, and cfs at different times over the years. It was long, awful, invalidating, and infuriating. This past month I was finally diagnosed with hEDS and POTS
Yes especially because I was a child when I first started having symptoms. It took me 10 years to get a diagnosis.
Why Does it Take so Long to get an Accurate Diagnosis?
There are thousands of rare diseases. It is impossible for a doctor to recognise and diagnose them easily. Diagnosing rare diseases takes time and often teams of specialists need to be involved. Many rare diseases have no diagnostic tests.
Many illnesses have overlapping symptoms. Conditions such as fibromyalgia, ME (CFS – chronic fatigue syndrome), Lyme disease, Lupus and multiple sclerosis can be difficult to diagnose because the conditions produce some similar symptoms. There are no reliable diagnostic tests for some of those conditions, so doctors try to diagnose by ruling out others. But they often get no definitive answers. Patients could see six specialists and receive six different diagnoses.
Another problem arises when you have been formally diagnosed with a specific condition. Symptoms are often lumped together under that heading. For example, “You have coeliac disease – that will be causing your nerve, joint and muscle pain.” It is correct – Coeliac disease can cause nerve, joint and muscle pain. But other conditions can also cause those symptoms. If doctors overlook other causes, patients might go for years without being diagnosed correctly.
In some cases, patients do not know what their symptoms are or can’t explain them properly to doctors. They may have become so used to living with symptoms that they seem part of normal life. They may be taking medication and believe they are getting side effects, but those side effects could be actual symptoms of an illness. They may be suffering from tiredness, exhaustion or sickness and believe they are just part of having to deal with their illness. But those could be symptoms in their own right.
Can Patients Help Doctors?
As patients, we can try to help our doctors.
If we plan for a doctor’s appointment meticulously, we might get more help. Write notes, draw diagrams and explain the pain or symptoms as well as possible. It’s so important to note all symptoms – even symptoms which might seem trivial, as they might be the final piece in a puzzle.
However, even with all the pieces of the puzzle on the table, unless they are put together correctly, there may still be no official diagnosis.
Chasing The Cure
I’ve learned recently about a new medical show which started airing in the USA on the 8th of August. It’s called ‘Chasing The Cure’. Doctors will be looking at people’s symptoms and test results to try to find a diagnosis. This isn’t a medical drama. It’s real life. With real patients.
Chasing the Cure wants to help people who are suffering from undiagnosed, misdiagnosed or uncured health conditions. A panel of top doctors will work alongside the Chasing the Cure audience in an attempt to solve some medical mysteries.
Unfortunately, the show is only airing in the USA at the moment, so I can’t watch it. I found out about it through a relative in the USA. One of the show’s participants is a fifty-one year old lady called Rori Albert. Rori was a first grade teacher at my cousin’s children’s school.
Rori Albert – Chasing the Cure
In December, 2013, Rori started having problems. She fell while at work a few times, then her balance became so bad that she needed to use a walker. About eight months later, she developed speech difficulties. She was having trouble finding words and her speech was slurred. As time went on, she lost all her speech and walking ability. She can no longer sit up on her own and can only communicate using text.
Rori went from being an active wife, Mom of two children and much loved teacher to becoming severely disabled.
She has seen numerous doctors and specialists who have given several possible diagnoses – primary progressive MS, stiff person’s disease, mercury poisoning, lyme disease, HSP (Henoch-Schonlein purpura), PLS (Primary lateral sclerosis). However, test results all came back negative, therefore none of these conditions have been confirmed.
No treatment has ever helped Rori’s symptoms. She has no diagnosis and no treatment. It is distressing for her and those who love her.
Chasing the Cure’s Facebook page has many more stories and videos about other undiagnosed patients who are desperate for answers. The programme, hosted by Ann Curry, will air on TNT and TBS.
An Accurate Diagnosis can Give Hope
What hope does anyone have, if doctors cannot give an accurate diagnosis? Without a diagnosis, there is no cure. Sadly, some conditions can’t be cured, but at least pain or symptoms might be better managed if the patient has an accurate diagnosis.
Illness doesn’t discriminate. People can be healthy one day, living a fulfilling life. Then their world can fall to pieces. People need help. They need hope. They deserve hope. To get hope, they need an accurate diagnosis.
Have you had problems getting a diagnosis? Please share your story in the comments section below, or join the conversation on Twitter or Facebook.
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