Diagnosis & Euphoria

It is November 2016; I am tired of being the voice athlete something had to change.  I was four months into a new job and my voice was getting worse. I simply couldn’t carry on anymore.

Off I went back to the GP. Only this time I was living somewhere else, so it was of course a different GP. I simply explained that I was anxious to the point of expecting a nervous breakdown, I couldn’t speak properly, and I had chest heaviness every day. That was all that was needed. I informed her I had found a specialist who treated SD and needed an urgent referral.  What a difference! She immediately filled out a referral,  listened to me, (although it was difficult for me to speak), and she did not pretend to understand. She was professional and proactive.

The shame I had around my voice was no longer an issue that day. I almost cried when I told her how anxious I was. The GP had eyes she didn’t need to ask too many questions she could see how affected I was. I was immediately prescribed something for depression. Oddly enough I was not depressed, it was the anxiety that was out of control, and this particular drug helped with that problem. I was not ashamed anymore. I just gave in. If I needed to take something to control my anxiety then so be it.

Drug prescribed √

Referral done √

What more could I want.

My letter arrived from the hospital soon after. My appointment was 3rd January 2017.

Let’s back track to the nice doctor with the massive emerald and diamond ring who diagnosed me (in my first chapter). When I was informed I had spasmodic dysphonia (pronounced dystonia) the doctor asked me had I ever heard of it. All I could do was nod my head. Had I heard of it!! It had dominated my life for fifteen years. I was told it was a very rare neurological condition that could not be cured only managed with botox injections. I was given literature to read, phone numbers, and advised to join the Dystonia Society. The doctor said she could inject me that day. Fantastic! I will be able to speak. Let’s get going.

I waited for the botox to be delivered from pharmacy. I felt elated. I had butterflies in my stomach; the kind you get at Christmas when you’re a child. It’s over I thought. No more struggling. I’m free.

I was called back in. I lay on the examination table and was wired up to a machine. I had to speak and say EEE. The machine was firing away. Apparently they were my spasms. In she went with the needle straight through my neck and into my vocal cord, and again into the other one. Yes it felt odd. I wouldn’t describe it as painful, but it wasn’t pleasant. I lay there thinking; I must be the only person I know getting free botox on the NHS but it’s not in my face where it belongs!  It amused me.

We arranged a follow up appointment for two months. When I was leaving the room the doctor said to me ‘don’t worry I will get you speaking normally’ well that was it……

I walked out of the hospital tears streaming down my face. It was a mixture of relief and bottled up feelings of shame and frustration. I had just been diagnosed with a rare neurological disorder that no one had heard of let alone understood. I was ecstatic, elated and giddy with excitement. I wanted to shout out to everyone ‘I have a neurological disorder that can’t be cured isn’t that fantastic!’ I wasn’t mad after all. Well may be just a bit.

However, in the midst of my euphoria regarding my diagnosis there was one thought at the back of my mind. I was thinking; I want that emerald and diamond ring. How can I get one without breaking the bank. After all it is my birth stone and I deserve it. I will think of a way, I always do.

Nothing could go wrong now. It was a bright sunny day and I was walking on air. Fifteen years of hell. I got my parole. Oh, and I had finally won the gold medal for my vocal athletics. It may have been four years late, but I mentally awarded it to myself.

Image result for pics of olympic gold medals

The next few days were interesting. My voice changed it sounded different. Its worked I thought. Oh no it has gone again, oh hang on it’s back, nope it’s gone again. That’s how it went until finally the spasms stopped and I could speak!! Oh what joy. I loved my voice.

I went on a gab fest. I talked and talked. I spoke in meetings; I spoke in coffee shops competing with the noise. I even spoke on the phone without effort. Bob Marley had been right when he had sung ‘everything’s gonna be alright’ it had taken a few years though. He forgot to mention that bit.

Life was good everything was fine now. I can live with this. Just have an injection every few months and no one will even know.  Right?

Wrong……to be discussed later.

So, what next? Well my mind wondered back to the sneering GP eight years previously. Oh yes, him I thought. What do I do about that?

Now I’m not one to name and shame so I won’t. I will however share what I did.

 

Dear Dr. XXXX,

I wanted to take the opportunity to write to you regarding a consult we had in 2008. I came to you with debilitating anxiety and difficulty speaking. You offered me valium which I declined as I felt it was a deeper problem that needed addressing. My anxiety and speech difficulties persisted so I came back to see you shortly after. I had by this time done a lot of research around my symptoms which I told you about. I informed you I thought I had a condition called spasmodic dysphonia and needed a referral to a specialist.

Your reaction was one of ridicule and you told me I was self-diagnosing which made me feel more anxious, as well as insignificant. I knew I was not going to get anywhere, so I requested valium as my anxiety was spiralling out of control. You then made me feel like I was drug seeking by your comments that followed; along the lines of ‘Oh so you do want valium then, I thought you didn’t like taking drugs’. I will never forget that comment, nor the tone in which it was delivered.

As a consequence of that consult I have spent the last eight years seeking alternative therapy such as hypnotherapy, reiki and meditation, as I thought it was all in my head. My speech got worse over the years and I thought I was going to have to give up my job.

I recently went back to my GP and said the very same thing to her as I said to you eight years ago. This time I was referred immediately to an ENT surgeon who specialises in voice disorders. My GP was empathetic and listened to me. I saw XXXX on 3rd January 2017 who diagnosed me with spasmodic dysphonia, the very thing I told you I had. The specialist doctor was appalled I had been living with such a debilitating condition for so many years. My quality of life has been very poor at times when my dysphonia was at its worst. I have struggled to hide it from people and it took me eight full years to pluck up the courage to go back to a GP.

Rather than litigation, I would like you to use my case as a learning curve for your future practice. I want you to reflect and really think about how you may have better managed this situation. Perhaps you could discuss this at your next multi disciplinary meeting? I would never want this to happen to anyone else. The past eight years have been a real struggle, had you referred me when I asked this could have been diagnosed and treated a long time ago. I have sent a copy of this letter to your practice manager so everything is open and transparent, as I’m sure you will understand.

Sincerely,

XXXX 

So there you go, I had got it off my chest and said what needed to be said. I received a sorry-gram and a promise of reflection. It was now in the past and I wanted to move on with my life. I did chuckle to myself though as I thought how many GPs would be looking up spasmodic dysphonia!

I felt like a different person. I relaxed. The doctor had told me all my muscles had tensed up in my neck and shoulders over the years as I had battled to speak. I slowly felt the tension melt away.

I was so happy, and may I add, I was right about my diagnosis.

So life was normal. Well for a while anyway.

I did not realise what was to come. It wasn’t so rosy after all. I will try not to bore you but I do need to tell you.

I’ve been called a few things in my life, but boring isn’t one of them.

Until the next time.

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12 thoughts on “Diagnosis & Euphoria

  1. I read of many people with MS who have been treated in a similar way by their GPs. I know too that although its an anxious process to be told that you have an incurable disorder , it is indeed far worse to not be told. This often happens when symptoms cannot be easily seen- so that people on hearing the word fatigue will often say ‘oh well I get tired too’. No, not tired – someone has pulled the plug out……..!!
    Your journey has been a difficult one but relating it to other suffers will help them a great deal.

    1. I hope so. I want to get the message out as no one has heard of it!

  2. I can’t help thinking that this disabling condition has somehow made you a stronger and ever more resourceful person . Good for you

  3. I like your Gold Medal athlete idea.
    I give myself imaginary Girl Scout Badges for things I’ve been through. I sew them to my imaginary vest.
    Once I was raped in the operating room while unconscious by the orthopedic cast tech. Badge for getting through that. (No one else has that badge). I had both parents die in my arms in their old age, badge for that. So many good and bad things that stick out.
    My severe Spasmodic Dysphonia has turned into an adventure really, I have several great badges for transforming it into something good for myself and everyone around me.
    Great response to your bad experience with your old GP! You should have asked for an emerald ring.

    1. You’ve certainly been through a lot. I think SD is linked to trauma which I will be writing about. And, yes to the emerald ring!!!

  4. Thanks for sharing, love it. I have VCD which went undiagnosed for 5 years- similar issues, it’s asthma, it’s your anxiety, it’s in your head. Screw them I say. So glad you sent the letter- good move!! Best of luck to you (us) add we journey through rare, unheard of conditions.

    1. Yes, some doctors have no sense of how we feel. I think many of us diagnose ourselves

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