Devon, UK

Bio: I'm a 40 something year old woman who has been sick since 2007. It took four years to be diagnosed. I have been diagnosed with postural orthostatic tachycardia syndrome, Ehlers Danlos Syndrome and now severe autonomic dysfunction. I was diagnosed with a spontaneous CSF leak last year which has self healed. I have also been diagnosed with Menieres disease and have lost over 10% of my hearing in my right ear. Just to name a few issues. Originally in 2007 I was diagnosed with having Myasthenia Gravis hence the name of my blog etc however that diagnosis was removed in 2009. There are still some doctors that I see that believe I have MG and some that don't. No one can explain the Ptosis I suffer from daily or my breathing issues. I am married and own three dogs, who feature in my blog! I also collect Emma Bridgewater Pottery. You can find me on Facebook https://www.facebook.com/themyastheniakid and you can find me on Instagram racheljillmorrismcgee

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2 thoughts on “About

  1. Hi 🙂 Just wanted to drop a line and say hi – following your page as we have some similar issues and Im always keen to know if anyone else ever finds an answer! Hope you don’t mind 😉
    I have EDS myself, and I have 5 boys 16 down to 5, who all have EDS too – they also have autism and various other issues.
    I have one in particular like your self with the ptosis – hes had it since birth though and was initially diagnosed with cerebral palsy, then myasthenia gravis, now EDS (6 years back after some nasty child abuse allegations due to his significant bruising that I took him to ER for!) that’s how we finally got a name for all that was wrong with us all those years.
    I am still searching for answers for my 12 yr old (the one with ptosis) as he still gets myasthenia type symptoms in hot weather and when tired – interestingly enough, so do I but not anywhere near as bad as him. He has general hypotonia as well – exacerbated by exercise or heat. he uses a wheelchair for walks/shopping as he gets far too tired, and as soon as he is tried the drooping starts and the falling starts too, as does the funny breathing/gasping, all indicative of a milder myasthenia type disorder.

    I find medical professionals here (Australia) very hard ot find and they simply don’t listen – mothers usually know best but they still don’t take into account our observations and experiences.

    Anyway, just wanted to say hi – you are one of the first I have ever found with similar symptoms to my 12 yr old – I also have a 16 yr old who just been diagnosed with POTS after 4 years of fighting for testing – still awaiting to see someone about medications – my 12 yr old also seems to be following the same pattern and I think he is developing POTS now too – far too many migraine episodes and dizzy spells when he gets up or moves certain ways 😦

    Wish you well, and hope you get some real answers soon – will update if we find anything interesting out!
    Cindy (The Buchans)


    • Hi Cindy ( and the family Buchan )
      Firstly thank you for leaving a comment on my blog its very kind of you.

      I am so sorry to hear of your health problems and that of your boys. I was wondering if you have ever seen the NeuroTalk website? http://neurotalk.psychcentral.com/forum77.html they have a section on Myasthenia and there is a lady there who is extemely knowledgable on Myasthenia and I am sure she would be able to offer you some advice. I am on there too my name is Rach73 just in case you want to join the forum.

      Obviously I am not a doctor but it sounds like your son with the ptosis has some kind of CMS – congenital myasthenic syndrome. Which would have been evident from birth with the ptosis. However I am sure you already know that as you sound like me forever searching for answers. I get ptosis when tired and also the breathing problems. Luckily I have home oxygen for when these issues strike. I have given up going to hospital as I always have more knowledge about my condition than the staff treating me. They usually tell me they’ve had to google it!

      I still get told ( depending on what doctors I see ) that they believe I have MG. Mestinon / steroids / ice resolve my ptosis. The ice pack test is the only test which works on MG. So there is obviously something going on at the neuro muscular junction.

      I am lucky that I have found a good gp and consultant who will both admit they don’t have all the answers, which is so refreshing after struggling to get a diagnosis and being told my symptoms were all in my head.

      I hope your 12 year old gets the tests for POTS soon as it is miserable when you know what’s wrong but no one is listening. I also hope your 16 year old starts getting the medications he needs to help him with his POTS.

      Its so very strange to have at long last found someone who has the breathing issues / muscle weakness / ptosis who also has EDS and POTS. I am very excited by it but also very sorry that someone so young is suffering like this. Hopefully together we shall get some answers and I will certainly update you and the blog should I get any!

      Thank you so much for sharing your story with me and letting me know that my bizarre symptoms aren’t uniquely mine!

      Rachel x


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