A Potted History

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Up until 2007 I had what I would term pretty reasonable health. I seemed to suffer with a lot of joint pain and would pick up injuries very easily but I was holding down a full time job and enjoying life.

My blood pressure had always been low but within normal range and I have had  palpitations for as long as I can remember, which I self diagnosed as anxiety.

I was ignorant regarding the world of dysautonomia / the autonomic nervous system / chronic illness and was ill prepared ( pardon the pun) for the twists and turns my life was about to take.

How it started:

On 5th January 2007 I suffered the worst migraine I’ve ever suffered. It left me wiped out for days and the right side of my face felt numb and tingly, like I had just had dental work done. Over the next six days I visited my GP surgery on three occasions, no one could tell me what was going on. At this point I was told it was a migraine hangover and I would be better by Friday. Such a shame they never specified which one.

On the 11th January I suddenly developed severe ptosis, making my right eye shut completely and my eyebrow was sat on top of my eyelid. I saw an out of hours Dr who diagnosed Bells Palsy and I was prescribed prednisolone.

Over the next 16 months my health deteriorated to the point where I had to give up work and be ill health retired at the age of 34.

My diagnosis history thus far:

January 2007 –  I was diagnosed with ptosis caused by Bells Palsy. I was told it was an atypical presentation as with most cases of Bells Palsy the sufferer can’t close their eye. I just couldn’t open mine.

August 2007- I was diagnosed with the autoimmune disease Myasthenia Gravis ( hence the name of the blog).

2009 –  the diagnosis of MG was removed and over the course of the next year I was diagnosed with;

Cortical Plasticity- caused by an unknown virus whose existence was never proved in any blood tests. ( I was prescribed  Lamotrigine an epilepsy drug and informed I would be better in five years. I’m still waiting)

Deliberate breath holding – the doctor used this to explain why I randomly desaturate.

An unknown movement disorder.

Conversion disorder / somatiform disorder.

Although no one ever told me to my face about the psychiatric diagnosis, I discovered it in my medical notes. No psychiatric care was ever offered to me. I never saw a psychiatrist.

How I found out what was wrong with me :

In 2010 I stumbled upon the Internet forum DINET. I had been googling my symptoms to try and get some answers. After talking to its members I bought myself a blood pressure monitor that also takes your pulse. I started recording the measurements and it was clear I had autonomic nervous system issues.

It took a year of constant begging to get my GP to refer me for a tilt table test because he believed it was normal for a persons heart rate to increase by over 60 beats per minute on standing and PoTs didn’t exist. I was also informed by the same doctor that Ehlers Danlos Syndrome was rare and I didn’t have it. By the time of my tilt table test in 2011 I was in the process of moving doctors surgeries as it was clear no one at the old surgery was willing to help me.

On the 21st January 2011 I was diagnosed with postural orthostatic tachycardia syndrome whilst still strapped to the tilt table, so impressive were my results. In May the same year I was diagnosed with Ehlers Danlos syndrome. Finally I knew what was wrong and was being taken seriously.

Since then my condition has deteriorated further, I have now been diagnosed with post prandial hypotension, orthostatic intolerance and severe autonomic dysfunction. My then consultant has informed me I have one of the worst cases of refractory PoTs he has ever seen.

I still suffer from varying degrees of ptosis every day. No one has ever been able to tell me what causes it. All I know is it resolves when ice is placed on the eyebrow ( myasthenia gravis is the only disease in which this would happen, it resolves with mestinon – a drug mainly used in the treatment of MG). So my ptosis remains a mystery and new doctors I see still say its MG. Which is why I kept the blogs name the same after the MG diagnosis was removed.

In 2015 I was diagnosed with arthritis in my spine, knees, hips and fingers.

In 2015 my old consultant and I parted ways. After 4 years under his care he had done nothing to improve my situation. He was also passive aggressive a lot of the time and told me I spent too much time on the internet looking up syndromes to have. A month after he said that I was diagnosed with Prolactimenia (raised prolactin) and I started to lactate. Thankfully that seems to have disappeared and my levels have returned to normal.

I saw my new consultant in December 2015 and in the time I have been under his care I have had more tests (ones that had been promised for 4 years but never happened under the old consultant) and more medication tweeks.

In 2016 I was diagnosed with a CSF Leak and Occipital Neuralgia (caused by the CSF Leak). Currently I am trying to find someone to perform an epidural blood patch to plug the leak.

This is my blog and this is my story. All photographs and blog posts are my own work.

 

Thank you for reading.

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3 thoughts on “A Potted History

  1. HI Myasthenia Kid,, I can identify with your journey, I am starting at the beginning. I also have a very difficult disorder to diagnose because the symptoms are often misinterpreted as somatoform disorder.. My diagnosis is Andersen Tawil syndrome. A mineral metabolic disorder. My ion channels malfunction and as a result my potassium likes to lodge in my muscle cells leaving me functionally hypokalemic even though my serum levels remain in the normal range predominantly. This results in severe muscle weakness and even periods of paralysis. Some with my disorder also have accompanying Myasthenic crisis. It is considered a congenital myasthenic syndrome versus the autoimmune type. Perhaps an increase in your potassium intake would help your symptoms also. Hypokalemic or Hyperkalemic periodic Paralysis are almost always misdiagnosed as somatoform disorder first and honing of the diagnosis only occurs if one is lucky enough to discover the disorder by research and then convinces a doctor to evaluate and diagnose.

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    • Thank you so much for taking the time to read and comment on my blog.

      It is always nice to hear from those who have found the posts useful.

      I hope you start getting some answers soon and start being able to better manage your condition. Starting out on this journey is always scary especially when those in the medical profession don’t believe you.

      It sounds like you have found a doctor that you can work with which is great.

      Good luck
      Rach x

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  2. Check out the neuromuscular database here: http://neuromuscular.wustl.edu/synmg.html

    I linked the page in regards to neuromuscular juncture disorders since you obviously have tell tale signs of myasthenia. Like the poster said above, MG isn’t so straightforward. Checkout the different phenotypes including the congenital ones. After you exhaust those, checkout the other stuff (mitochondrial, myopathies etc) that can cause ocular weakness aka your ptosis.

    Also, try searching the database for conditions associating facial weakness + autonomic.

    Hope this might help speed up your diagnosis, sure did for mine (mitochondrial myopathy)

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