Diagnosis & ME

In this week’s episode I’m going to be chatting to you about Diagnosis & ME. This is the second episode for this podcast and following last week’s episode when I shared my own ME story, I wanted to chat a little more about getting a Diagnosis of ME and what that means.

Before I launch into the topic fully, if you want to be one of the first to be notified about each new episode, please do like, share and subscribe to the podcast or sign-up for my mailing list by visiting www.rhonabarton.co.uk

Ok, let’s begin!

As I mentioned last week, I spent almost 10 years living with M.E. I was paralysed, bed-bound and wheelchair-bound before my recovery from a car crash helped me get back on my feet. I tried all possible solutions that were put to me, including hydrotherapy; speaking with a psychologist; cognitive behavioural therapy; graded exercise; dietary changes; massage; acupuncture … the list goes on. What I didn’t really chat much about on last week’s episode was my diagnosis and what that experience was like.

To some extent, I was very fortunate with my diagnosis. My GP, a kilt-wearing, Harley Davison driving, older chap, was of the belief that, as the patient, you know your body best. He listened to what I had to say. Having been back and forth a few times when I was initially diagnosed with Labyrinthitis, he saw for himself that I wasn’t improving. Overall, he was a kind person who took the time to empathise with me and let me say what I needed. He didn’t force his opinions on me, and he didn’t try to persuade me that it was all in my head. He treated me as a human being who knew that something wasn’t right.

Based on my ever-increasing symptom list, the conversations I’d had with mum and my GP’s own experience, we agreed that a diagnosis of ME was most likely. He signed me off work for the next 4 weeks and sent me home with the sick line.

He also wrote to, at the time, the UK’s leading ME specialist. For me, that appears to be where the issues began. I received a letter advising me that I would be seen by the specialist, but I would have to wait for an appointment. I waited about 4 months until I received notification that I would be seen.

When the appointment date came around, Dad bundled me into the car. We made our way to Glasgow and had to walk through the hospital to get to the relevant area. There, we had to sit in the brightly lit waiting room and wait to be seen. All of this and then one of the things I was expected to do for this leading specialist, was hop on one leg. Yup! You heard me! The UK Leading ME specialist had me hopping on one leg! And was then surprised that I did it. He was surprised that someone with ME – you know, the kind of people who like to push through and do all that’s asked of them – actually did as they were asked. He then had the gall to tell me that, as I was able to hop, I clearly didn’t have ME. I was furious! My Dad was furious! We made it back to the car and home where Dad let Mum know the outcome and, she was furious!

I need to take a pause at this bit as I’m beginning to feel angry again thinking about the way I was treated. I know it’s over 20 years ago, but I was really at my lowest and it was such a horrible way to be treated.

Let me talk to you a bit about how ME is diagnosed. This information is taken from Action for ME’s website and if you want to visit them, head to www.actionforme.org.uk

Scientists have not yet found biological abnormalities in ME that are specific enough to be used as a diagnostic test.

A doctor will assess your medical history, recognise the typical symptom pattern of M.E. and conduct basic tests such as blood or urine samples, to rule out other conditions. You may need several visits to the doctor.

There are a number of illnesses that can sound quite similar in their symptoms and excluding other conditions is an essential part of the process to inform a diagnosis.

The earlier the illness is recognised, the sooner symptom management and support can begin. One aspect that can be helpful for some people is to keep a diary of their symptoms so that they can take this to their GP. I had a list which I kept updating and forgot to take it with me so maybe pop a sticky note at the door as a reminder!

Once you have a diagnosis of ME, your GP may be able to refer you to an ME specialist depending on availability in your area. They may be able to offer options for managing your symptoms.

The 2021 NICE guideline for ME for health professionals in England and Wales advises that they should suspect ME if:

  • a person has had a specific set of persistent symptoms for a minimum of six weeks in adults and four weeks in children and young people and

  • the person's ability to engage in occupational, educational, social or personal activities is significantly reduced from pre-illness levels and

  • symptoms are not explained by another condition.

However, contradictory guidance has led to concerns that a small number of people with ME are being challenged by their healthcare professional as to the validity of their ME diagnosis, and instead being told that they have medically unexplained symptoms.

The 2010 Scottish Good Practice Statement (SGPS) on ME provides GPs with guidance on the differential diagnosis and clinical management of patients with ME. It recommends making a formal positive diagnosis three-four months into the illness, based on symptom pattern, and excluding other conditions as appropriate.

There is no official guideline in Northern Ireland, though some doctors choose to use the NICE guideline, and currently no specialist services.

Alright, that’s helped calm me a little bit now. Let’s me jump back to the testing that I went through.

Towards the end of January 1999, I lost the use of my legs, so Mum kindly called the specialist’s receptionist/secretary and let them know the latest in case it made a difference to the next appointment. It did not.

In February, I spent 3 days in hospital going through a barrage of tests that were requested by the Specialist. I had bloods taken again, urine samples checked, an MRI scan of my brain and a lumbar puncture.

I still shudder at the memory of the lumbar puncture. There’s something very odd about allowing a stronger insert a needle into your spine voluntarily and then having to lie flat out for at least 4 hours!

The MRI scanning machine was so loud that it made me dizzy whilst it was switched on. I also wasn’t overly happy with being shoved head-first into a metal tube and being told not to move for what could be up to 30 mins.

I was relieved to get back to the house and my own bed. I was exhausted. I had been poked, prodded, moved, spoken at, talked over, stared at by trainee doctors and disbelieved by the so-called Specialist. I felt like I’d be run over with a steamroller.

About a week or so later, I made a trip back to my own GP. Remember him from earlier? The Harley-driving, kilted GP? Well, I visited him to find out the results of all of the hospital tests.

He was interested in hearing my own thoughts and experiences from the hospital visit. He sat quietly and let me vent. He checked in to see how I was doing on that particular day and then we moved on to discuss my results.

He kindly translated the Specialist’s report and went through each of the test results. Blood tests – normal, urine samples – normal, MRI scan of brain – normal and lumbar puncture – normal. Specialist’s overall findings – a stress related condition probably from stress from either work or home life. Well, wowsers! I don’t have a medical degree but even I was able to figure out that finding!

I cannot tell you how frustrated I found the Specialist. I had hoped he would have been able to offer some hope to me as I was facing this new and scary world but, instead, it was as if I was being fobbed off and told he didn’t believe me or that I didn’t matter. I was invisible to him as far as I knew.

Thank goodness for my GP. He would be the one to offer me hope, treatment suggestions and even laughter during our appointments. One of which was on this very day while getting my results. He told me that my MRI scan was normal, saw my disappointment and quickly followed it up with a comment about at least we know there’s a brain! We both laughed about it as previously, when struggling with my words and focus, I had begun to doubt I had a brain at all!

By the time I had left that appointment, my GP had agreed that we would ignore the Specialist’s findings as they weren’t productive and he would continue to monitor me with regular appointments and that he was confident in his diagnosis of ME with on-going Labyrinthitis.

As you can see, I had some positive aspects to my diagnosis and some negative aspects. I choose to continue to think of the positive experiences and the excellent treatment I received from my GP. I know that other’s aren’t so fortunate and I hope that changes for all of us.

There are a couple of points from today that I’d like you to take away from this:

1. Getting a diagnosis can take a while – do not lose faith, you know your body better than anybody so please continue to ask for help.

2. The diagnosis you do get, doesn’t have to be the one that you are stuck with.

3. There is guidance out there for GP’s to follow

4. There are organisations, such as Action for ME that continue to fight our corner.

That’s it for today everybody. I’ve shared my experiences of my diagnosis and ME and in doing so, chatted about the wonderful GP I had, the awful experience I had with a so-called Specialist and the testing that I underwent.

Next week, I’ll be chatting about Isolation and ME.

Please like, share and subscribe to Believe in ME with Rhona Barton via Apple podcasts, Spotify or wherever you find your podcasts and remember that you can sign up to my mailing list by visiting my website at www.rhonabarton.co.uk

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