Red and the Big Bad Wolf

The story of me – Red living with Myasthenia Gravis or the 'Big Bad Wolf' as I prefer to call it

When I last wrote about my diagnosis story we were in August 2012 where I was sick yet again and headed back to hospital for 3rd time.

Over and above the normal symptoms I realized it was time to get back to hospital when I couldn’t reverse my car out of a normal parking spot. 😳 And this at the motor dealership in front of everyone – and I went over a traffic cone! I was mortified and terrified.

My time in hospital felt all to familiar. I continued to feel dreadful with alternating weakness, headaches and confusion. I also suspected Dr. M was over medicating me and that viral encephalitis wasn’t the correct diagnosis. I don’t even think that a lumbar puncture was done this time.

Dr. M did various blood tests but nothing showed up. He reluctantly referred me to a specialist who I would like to refer to as Dr. ‘OMG I blessed you with my presence when I have no time for you.’ I didn’t like him in case you haven’t noticed.

Dr. OMG flapped into my room with curtains flying – nearly gave me a heart attack! He did a high level autoimmune indicator that was negative. He didn’t do any other autoimmune tests such as ANA indicators. He concluded that I was over medicated and stressed. He was right about the over medication. And yes of course I was stressed, but that was not the root cause!

I wanted to jump out of my bed and strangle him! Stress is not a diagnosis and in my experience means that a doctor has no idea what is wrong and no intention of finding out.

I went home to my Mother with a bag full of medication to continue my recovery, but I got worse by the day.

I was constantly nauseated and couldn’t stomach eating or drinking anything other than water, Cream Soda, yogurt, fruit and plain omelette. I couldn’t even open the fridge, because the food smell would make me instantly nauseous. My poor Mom had to eat each meal alone. 😔

To make things worst I was sleeping all day – only able to wake for meals and a bath.  And when I was awake I was tired and confused. I felt like I was in one of those movies where you are held against your will in a psychiatric ward of a hospital – drugged, unfocused and floating along a corridor looking like one of the characters from Girl Interrupted.

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And I did look horrible – as a result of all of this I weighed 48 Kgs which is problematic for my length of 1,72 M. Mom was very worried and I only had half a clue. She decided to take me to my childhood GP who is an excellent doctor and not Dr. M.

My GP was equally concerned and ran liver function tests. The results were dreadful and not because I was a drinker to quote him! 😊 It was because of my medication and one culprit Topomax was also responsible for my constant drugged feeling. I went off Topomax and one or two other medications and soon started feeling better. 😄 I wowed not to see Dr. M again.

I took a long time to recover and only returned to work in November on a part time basis. I was happy and healthier –  still struggling with headaches, weakness and general body pain.  On a good note this is when I stature to get to know the Viking better after briefly meeting him in August. 💛💛💛

I decided to seek a second opinion about my health and got an appointment with a highly regarded neurologist Dr. H. He reviewed my case and also repeated his own blood tests and EEGs.

His words to me were powerful ‘I don’t know where this doctor studied medicine, but when I was in university this is certainly not how you diagnose encephalitis.’  I never had encephalitis – your EEGs were normal and more important your CSF tests were also normal.

I was horrified!  It confirmed my worst fear! I had been treated for something I didn’t have – poisoned and a whole year of my life wasted.  What was wrong? He didn’teknow – it was probably stress. 😳 He ruined it!

I left feeling dejected , but hopeful that I won’t get ill again. 2013 would prove me wrong.

Xo

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