A Potted History

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.

13 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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  3. Rachel, I’m sorry to hear about you being chronically ill. It makes life very hard… I had my accident in and that resulting hip trouble from October 2007. Like you, I was just about healthy, healthy enough to lead a normal life. Also had my fair share of idiot ‘doctors’, which can add to the strain. These days I do container gardening which really helps – physically and mentally. All the best, Faith xo

    Liked by 1 person

    • Hiya Faith,
      I am really lucky that I discovered sewing / machine embroidery / quilting in 2017 and that takes up a lot of my time. I have no idea how I filled my time between 2008 and 2017! I must have watched an awful lot of crap TV. I love the fact I have a creative outlet now and I am self taught. Using magazines, books and Youtube to help me out when stuck.

      It has been the only thing that has got me through losing my three dogs within 55 weeks ( 2 in 7 days at the start of the year), the loss of my Grandmother, one of my closest friends and hubbys best friend. It has been a horrible few years.

      It is always good to have a hobby and something that fills your time. Gardening I’m afraid is not for me, plants come to my house to die. I can just about nurse cut flowers through 7 days! But I really admire anyone who does garden purely because I can’t.

      Thanks for reading and I am sorry to hear about your accident.

      Rachel xx

      Liked by 1 person

      • So much loss… I am sorry.

        I love sewing too. Especially hand embroidery. I’ve got some stuff up on my blog. Sewing and crafting were the initial things that helped get me through the beginning of my chronic pain. I’m glad to hear that you found it too. It’s so peaceful isn’t it? When it gets colder I’ll switch more to sewing again. Gosh, I’ve got LOADS of books lol!

        Are you in England too?

        Faith xo

        Liked by 1 person

      • Hi Faith,
        Yes I am in East Devon. I will be having a look at your blog over the next few days.

        I did a lot of hand sewing last year – red work mainly. I haven’t done any for ages and I am sort of setting up some embroidery for myself to do. But I have just joined a sew along to make a scrappy quilt. As I joined two weeks into the project I have spent the last 7 days frantically trying to catch up which is stupid as although there is a time line it is just a guide and doesn’t have to be stuck to religiously.

        I have lots of books on quilting, red work, dressmaking ( I don’t do a lot of it) sewing and I have a subscription to a sewing magazine. A day without some sort of sewing or embroidery machine or hand is a day lost to me. If I am not actually sewing I am usually either prepping a new project or mulling one over trying to figure out how to put it together.

        Many thanks for all your lovely comments
        Rachel x

        Liked by 1 person

      • East Devon sounds wonderful.

        Your sew along sounds good. Would love to see what you’re working on.

        I did some clothes making, make a scotty dog skirt that is calf length. I’m too big for it now because it’s hard keeping my weight down without properly exercising and I’ve an untreated thyroid. I hear that calf length skirts are in now.

        I love my sewing and embroidery machines. I started with a proper vintage or antique model, a 1927 Singer!! Bought for £20 from a gentleman who said his mother did all her dressmaking on it, how lovely is that? Then my parents bought me a nice machine from Lidl, which I still use. When I began a degree in clothes design at the local college I bought a Husqvarna for embroidery and sewing. And then a 4th machine, another Husqvarna, second hand this time, for leather work as it’s an industrial model. Unfortunately cannot work long on my machines because the weight of my boobs…I seriously need a reduction to give my spine a break.

        Rachel, it’s really great meeting you! Thank you too for your comments, you made my day. xo

        Liked by 1 person

      • Lovely to meet you too Faith, its so nice to find someone who I have somethings in common with sewing, love of dogs, blogging and unfortunately shitty health!
        I am struggling with the sewing machine at the moment due to this blasted trapped nerve. It started last year, a few months of physiotherapy sorted it but I haven’t been since April and it has come back. I will have to try and sort out an appointment for next month. Its just a tad expensive as I go private as the NHS physio here is a bit of a nightmare.

        I am working on a scrappy quilt at the moment. Sewing lots of two inch wide fabric scraps together and then turning them into 10 inch blocks which will be trimmed to 9.5 inches. I have gone a bit mad as I am challenging myself to make a double bed sized quilt. That will be the largest one I have made, it is to get my confidence up before starting a quilt kit I bought last year to make one out of Anna Maria Horner fabric. I bought my backing fabric this month Kaffe Fasset and my wadding. I need to buy some Aurifil for piecing and quilting when I get paid ( I have a pension). I finally feel my skills are good enough to make it without messing it up. I will probably post next week on MG kid Blog about my scrappy quilt.

        My first sewing machine was a Lidl special £70 in October 2017. Since then and due to my inheritance from my grandmother I now own a Singer 901, a Janome Atelier 5, Brother Innovis 800e and an overlocker. I adore sewing. I have made dog beds, cushions, I made some clothes last year but I am in the process of losing weight so I am waiting until I am nearer my target and will then hone my dress making skills.

        Losing weight whilst having mobility issues is hard. I am a dreadful comfort eater and gin drinker when times get tough. After all that loss I ended up the fattest I have been in years and that was adding to my distress. I lost 3 and half stone last year but ended up putting on 21lbs when I lost Frankie and Mollie at the start of the year. I am only just beginning to feel like myself now and have started back on the diet to lose what I have put on and more.
        Thank you so much for a lovely chat this afternoon and leaving such lovely comments.

        I love the fact that you did a degree in clothes design I am so jealous. I would love to learn pattern drafting and constructing clothes properly but my concentration levels are rubbish, a weekly class would kill me. I have made a few of my own patterns by taking apart t-shirts etc but I have problems with sleeves and necklines. I have to bodge it because I a unsure as to what I am doing.

        It is horrible not being able to spend the amount of time I would like on the sewing machine due to my spine. Mine is caused by the EDS and Arthritis it has kindly given to me. And this bloody trapped nerve!

        Anyway I ramble on and on

        Take care
        Rachel x

        Liked by 1 person

      • Good afternoon Rachel 🙂

        Ooh,, you have a family of sewing machines too 😉 I’d love an overlocker. Shame we are both unable to sew as much as we’d like on them. I hope the physio sorts out that trapped nerve. I only see private physios too, NHS ones don’t do anything really, just tell you to exercise!

        I began, 2013, the fashion design course and I was promised extra help and that I’d be able to work a lot from home…but that was all talk, the main tutor let me down, and when I talked to the Citizens’ Advice Bureau they said the college had acted unlawfully, in fact, disability discrimination was what they called it. In other words they should have put their promised words of help into action! I told them there was no way I could study full time at the college because of my chronic pain but they didn’t care and it ended ugly and I have a huge debt because it wasn’t refunded when I said I was unhappy.

        I did a dressmaking course end of 2009, to middle of 2010 and learnt some skills there.

        I’m looking forward to seeing your quilt :)))

        Yesterday I made a lemon cake. It fell apart because it was warm and crumbly from the wheat-free flour but it turned out well (I’ve a wheat allergy). Added lime-lemon marmalade and butter cream for the filling! :p

        Have you heard of TAKIS SHELTER on youtube? He’s a Greek who does dog rescue work all on his own with just a couple of part time volunteers. There’s another shelter I follow on YT, Victor Larkhill, in Spain. They do a great job helping abandoned and damaged dogs. True angels.

        Take care ~ Faith xo

        Liked by 1 person

      • Hi Faith,

        I am so sorry about your experience with university. Sadly I can’t say it surprises me at all. I’ve had an awful experiences myself but due to a non disclosure agreement that’s as much as I can say.

        I will have to look for that on YouTube I hadn’t heard of them before.

        The lemon cake sounds lush. I did lots of cutting of fabric yesterday and managed to get some sewing done earlier by setting a timer and only sewing until it beeps and then moving in an effort to support my neck. I have booked an appointment with my physio for a week Tuesday. I am sure she will be cross because I have left it far too long but it has all come back very quickly in the space of two weeks but it is much worse than it was numbness / pins and needles wise. The whole front of my left arm is constant pins and needles. Anyhow making massive progress on the quilt even with having to set time limits.

        I hope you have a good rest of your day,

        Rachel xx

        Liked by 1 person

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