Searching For a Diagnosis: Chasing the Cure

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.

Searching for a diagnosis: Chasing the cure. Stethoscope.

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.

MTN. Mom
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.

Rachel
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

Kirsten
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?

Rare Diseases

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.

Overlapping Symptoms

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.

Misdiagnosis

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.

Symptoms

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.

Getting an accurate diagnosis can take years. If the puzzle pieces aren't put together correctly, the puzzle cannot be solved. Picture - hands holding jigsaw puzzle pieces.

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.

You can see a short video clip about Rori here on Chasing The Cure’s Facebook Page.

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.

Everyone deserves hope. Scrabble letters showing the word HOPE

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.

Thank you for reading. Please click the share buttons to share on your social media pages.

14 thoughts on “Searching For a Diagnosis: Chasing the Cure

  1. It’s saddening to know so many others have difficulties with diagnosis; I spent about 10 years being fobbed off with bowel problems, and diagnoses around the likes of fibromyalgia, connective tissue disease and bronchiectasis have been incredibly challenging. The new show sounds really intriguing! I wonder if I’ll be able to watch it in the UK online somehow..? I think you’ve made a good point about trying to meet doctors half way, and I do think that being prepared, being assertive, and arming ourselves with knowledge and suggestions are all so important. Nonetheless, sometimes it’s like talking to a wet lettuce or a brick wall, and we have to start over with a new doc/specialist to get anywhere. Very well constructed, thorough post, Liz!
    Caz xx

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  2. Waiting for a diagnosis can be so frustrating esp if you think you know what you have from your own research but the doctors take time to catch up!

    Thanks for the heads up about the TV programme – sounds really fascinating. Hopefully they post more clips on Facebook & maybe find the episodes on YouTube once they have been aired?

    Helen | http://www.helensjourney.com

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  3. I am having this issue with vertigo. Apparently, a whole lot of things cause it. So it is constantly waiting for appointments and tests and new doctors and neurologists and more tests. So going on two years and I still have no answers.

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  4. This is a comment from one of my readers. I’m posting it because she’s had a problem trying to comment.

    Claire :

    I diagnosed myself pretty much. My initial ‘injury’ was sciatica but due to fear avoidance, I developed overcompensation which meant my body began to move away from its ‘wired’ mechanism. In doing so, this created muscle overload resulting in active trigger points developing in my muscles. They caused muscle stiffness & then mimicked the sciatica I had been originally suffered from. I saw many drs, had a few physio referrals but at no point did anyone tell me why I was in pain all the time. Xray & and MRI scan was clear but the pain was relentless 24/7. It became a massive part of my life. & by continuing to work & ‘battle on through’, this was detrimental in forming very strong neurological connections in my by now broken pain system. I took it on myself to get well, & with the help of the Internet & constant research, I now have all the answers. I am more informed than anyone I meet. I still have flare ups but I have narrowed it down to 2 triggers & am now on the path to addressing the neurological connections & fixing my pain system. I’m afraid to say that absolutely no one within the NHS has diagnosed me, all that I have done is challenge my findings, apply them to my body & not give up. It’s given me all the answers I need.

    Great article & something that I think the medical profession need to know about. I hope lots of people will add their comments just to show how utterly impossible it can be for those of us living with something that is unrecognised, when all we’re trying to do is live life to the best of our abilities & good intentions, & all the time trying to manage what can be a catastrophic painful condition.

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  5. Heck yeah, it took years to find out what was wrong with me. AND I only found out because of all the research I did, and talking to other chronic illness patients. Then I finally had a doctor believe me and confirm it. It’s such a nightmare.

    @dSavannahCreate from dSavannahRambles

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  6. sjd68

    One of the most frustrating parts of the medical profession is not receiving a definitive diagnosis. Not knowing what’s causing the problems so that they can be treated. All too often in the US (especially) people are rushed through their office visit or insurance doesn’t cover all the test necessary to properly diagnose the first time. Or we waste time going to our Primary Care doctor first so they can recommend us to a specialist like a Neuro. When all along we know we will end up at the neuro. It’s very sad to see.

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  7. I’ve never had a diagnosis. It was so frustrating and I just felt that people didn’t believe my pain as I could never say what it was, what was causing it, or justify why I was having it. Now I’ve accepted it’s much easier to cope with. Fab post! x

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  8. Sarah Emery

    I remember tirelessly searching for a diagnosis for a loved one, years back. It was literally a life and death situation (we ended up in the ER a few times, each resulting to major surgeries). We sought for top surgeons and specialists across the country that led us to flying around the nation to get the options of top doctors. We finally found a fantastic doctor who has lengthened the life of that loved one but also improved their quality of life.

    Like

  9. I cannot begin to imagine the frustration involved with someone suffering without a diagnosis. Although the tv show sounds interesting, I wonder if there is a way for the medical community to connect outside of entertainment on a larger scale? As you mentioned rare diseases are just that rare and therefore many doctors do not have experience diagnosing and treating them. Unfortunately, it seems like the patient often has to be their own advocate doing research on their own and finding their own cure.

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  10. Having a diagnosis means that there can be a set plan to deal with it, or learn more. No diagnosis is just a ton of questions and super frustrating without answers. I can’t imagine how frustrating that can be for someone, especially anyone with a rare illness/disease. I’m sure that leads to a lot of other issues like depression and more. Sadly, it all takes time. I wish it was like on TV. That would be a major improvement.

    Like

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