Undiagnosed and rare conditions
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Myasthenia Gravis: negligent care

flowerychicflowerychic Member Posts: 1 Listener
hi there, I’m 32 and IV battling a condition Which has been suggested to be myasthenia Gravis (seronegative)  for some time for at least 4 years. It renders me to have stroke like episodes muscle spasticity I loose functions like speech the ability to open my eyes and move but I can hear everything. But for the past year I have progressively developed breathing difficulties which worsen upon eating talking walking and etc. These symptoms improve with rest and medication but keep reoccurring. I may point out this  has all come on very suddenly and has no known cause as yet I was literally sat on my sofa. 

I develop stridor which becomes difficult to control I have just come out of hospital after nearly two weeks where the care I received was really poor. I received no neurology input as my neuro was based at another hospital and the neurologist was “not working”  I was placed at risk twice during these episodes especially once in an mri scanner as I had severe stridor. I have left the hospital feeling traumatised and lesser of a person. I am chasing doctors to try and get the treatment I need and for them to scan my thymus as this hasn’t even been checked and I am exhibiting all symptoms. I am an intelligent caring kind person with a career a job a family a husband and this is ruining my life every day I am struggling with walking to talking and I fear that I am not being taken seriously and it is down to genuine post code lottery how can I speed things up and get people to take me seriously please. I have other conditions such as crohns and severe endo also and I take azathioprine mestinon and steroids and toprimate as I have tremors too .. I really am stressed with the whole situation and becoming desperate for some sort of advocation as my confidence in medical professionals is dwindeling. I can appreciate I have a rare condition but the sheer lack of compassion and the lies that get told are ridiculous and I just can’t take it any more. It’s simply not tolerable. I have a son whom is autistic too my family need me well I need to be well. I really need some help and guidance now especially as I feel quite vulnerable and unwell. ‘My instincts are telling me something is very very wrong the pain and pressure in my chest is not normal (iv had a lung function test my lungs are fine )  please help a girl out 😖

Replies

  • Cher_ScopeCher_Scope Administrator Posts: 1,825 Pioneering
    Hello @flowerychic and welcome to our community.  I am really glad you found us and shared your story.  

    I must admit up until reading your post I had never heard of Myasthenia Gravis. The symptoms you describe sound really difficult so you have my utmost empathy.  Take it one day at a time and be kind to yourself.

    I am sorry your hospital care was lacking.  I can imagine how frustrating that was.  When you know something is amiss in your body you want to be heard and seen to so what you are feeling is entirely understandable.  There are a few steps you might want to take to follow up your concerns:

    The first is contacting your hospitals Patient Advice and Liaison Service https://www.nhs.uk/common-health-questions/nhs-services-and-treatments/what-is-pals-patient-advice-and-liaison-service/ These are a good port of call to get advice and support relating to hospital stays and could help you if you wanted to make a complaint.  

    The second is you could contact a local advocacy service if you have one, or alternatively, you could contact a charity called The Advocacy People whose website is here https://www.theadvocacypeople.org.uk/ This is a free, confidential service designed to help people who have experienced poor health or social care. 

    In the meantime, make sure you keep talking about how you are feeling to keep your stress levels in-tact.  How are you doing today? 
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  • chiariedschiarieds Community champion Posts: 5,228 Disability Gamechanger
    Hi @flowerychic - & welcome to the community. I'm very sorry to read about the distressing symptoms you're experiencing. As we're not medical professionals, I would suggest discussing the worsening of these with your GP. Stridor is an unusual finding in an adult, tho very occasionally found in MG. I know more about stridor as our youngest daughter had this from birth, & our son developed this following surgery under general anaesthetic. Unfortunately, altho we had some excellent Drs (who didn't know the cause of their stridor), we also had some poor ones, who minimised my concerns later, when I found out the cause, & I was lied to, so I do understand a little of what you're going through.
    If they don't know, tell your GP about all your symptoms; perhaps looking at the whole picture may help. You could ask for a 2nd opinion if you wish, or an E.N.T. referral. Please let us know how you get on. My best wishes. :)
  • CressidaCressida Member Posts: 505 Pioneering
    @flowerychic sorry to hear you are feeling so bad. I am responding as I suffer (although fairly symptom free) from Myasthenia Gravis. I was diagnosed in my very early twenties. How old are you if you don't mind me asking? It took a fair few visits to my GP and finally to A&E before a clever registrar noticed the ptosis in my eyes and I was admitted for tests and diagnosed soon afterwards. I would have hoped that 40 years later the knowledge around it was a bit better. I did have a thymectomy although there was no scan of my thymus beforehand and it was a bit hit and miss as to whether it would help. Fortunately for me it did. I was taking mestinon and steroids before the thymectomy which you say you are also taking? Have you had electromyography, I had this and MG was diagnosed soon after. It could be that your other illnesses are making it more difficult for the neurology team to actually 'diagnose' MG. In the pre-internet days I got involved in a local MG support group so it might be worth looking on line for something similar? It might be worth getting in touch with this group for some support. When I was diagnosed it was 1:500,000 sufferers.

    https://www.musculardystrophyuk.org/about-muscle-wasting-conditions/myasthenia-gravis/myasthenia-gravis-factsheet/?gclid=EAIaIQobChMI2MXY0vCS6wIVmKztCh3oUg5REAAYASAAEgLnIPD_BwE

    Please pm me if you want me to answer any questions. 

  • Tori_ScopeTori_Scope Administrator Posts: 2,020 Pioneering
    Hi @flowerychic! I just wanted to check in to see whether you'd found the information here helpful, and to ask how you were getting on today? 
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