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Please Help me

littlecheflittlechef Member Posts: 63 Courageous
Hello everyone 
I received a call today from my neurogest as my appointment was cancelled she said I now don't have myasthenia gravis that i was diagnosed with in early January but bellspalsey as you was diagnosed with it in 2011 but I would not have it this long, I mentioned my breathing and head feels heavy neck cracks but not interested I told her I want to see a new neurogest she said OK and hung up on me  I have called my doctor for advice but still waiting for a call back.
I don't know what to do any more I have spoken to people with MG and all of them say it's myasthenia gravis. 
Can anyone please help me it's cracking me up. 

Replies

  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,694 Scope community team
    Hi @littlechef. Her hanging up on you sounds very unprofessional and it's no wonder you are upset. Did she give any reason for why she has changed the diagnosis?
    Obviously we can't provide medical advice here, but aside from waiting to speak to your GP, have you thought about speaking to PALS?
    Hopefully your GP will be able to arrange to refer you for a second opinion. 
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  • littlecheflittlechef Member Posts: 63 Courageous
    Breathing got to the stage I called 111 and sent ambulance got checked out called my doctor asked if someone will be calling me but still no call 17.25 only been waiting since this morning. Didn't want to take me to hospital but wants our doctors to see me urgently.
    @Adrian_Scope
    She said I was diagnosed with bellspalsey in 2012 and that's what it is I tried telling her about my breathing but didn't want to know so asked for a second a pinion and said OK I will sort it and hung up on me. 

    Problem is I also suffer from NF1 and had neuroendocrine cancer 2 times both tumours removed. But my doctor always says he can not help me only my neurogest but she is no good. 

  • Chloe_ScopeChloe_Scope Scope Posts: 10,680 Disability Gamechanger
    Hi @littlechef, I imagine this was a scary experience, especially when you didn't feel heard. How is your breathing at the moment?
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  • littlecheflittlechef Member Posts: 63 Courageous
    @Chloe_Scope
    Breathing a little better today thank you but starts again if moving around so taken things easy. Thank you for asking. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,680 Disability Gamechanger
    I'm glad it's a little easier @littlechef, please do take things easy and let us know if we can do anything to help. :)

    There is always the coffee lounge if you want to chat with other members.
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  • AilsAils Community champion Posts: 2,268 Disability Gamechanger
    Glad you are feeling a bit better, @littlechef.  Quite right to take it easy.  Hope you feel better soon.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • littlecheflittlechef Member Posts: 63 Courageous
    Thank you 😀
  • MothermaryMothermary Member Posts: 7 Listener
    Hi everyone.looking for advice..I'm disabled living in my car.i have a carer who's looking to get a 2 bedroomed flat.and is happy to rent me a room.what do I need to do.or who's the best person to talk to??all help appreciated...thanks.
  • littlecheflittlechef Member Posts: 63 Courageous
    @Mothermary I'm sorry you are living in you car noone should have to do this it's good of your carer to offer you a room in a 2bed flat but you should also contact your council do you have a social worker who can get you some accommodation or maybe you counciler who could also help I don't know were you live but do you have a good shepherd near you that can at least give you a bed.
    Sorry i can not give you any more advice. 
    Take care. 
  • MothermaryMothermary Member Posts: 7 Listener
    Thanks for your reply..I'm more than happy with the situation I'm in..only it was my carer saying I could..I only wanted to know.if it was allowed or not..but thanks anyway..
  • littlecheflittlechef Member Posts: 63 Courageous
    @Mothermary
    Hello again yes I think you should be ok to have a room with your carer as long as you are happy with with that it's a lot better than a car .
  • MothermaryMothermary Member Posts: 7 Listener
    Agreed..thanks.
  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    Sorry to read that @littlechef.

    Can you find another specialist or not? Is it possible to make a complaint in addition about the doctor who was quite unprofessional? Definitely try to request a second medical opinion. Keep a diary of all symptoms as well. This is always a good idea no matter what. It will ultimately help you in the process of getting a correct diagnosis. I have been to a unholy number of doctor and therapy appointments in the past three years alone. So I have met a lot of specialists. 

    Do not be embarrassed to do so either. I have gone to another pediatric doctor for more advice and support when the first doctor was stupid and rude. Also email or call up patient advocate services tomorrow morning in addition to complain about the behavior of that doctor. Perhaps they can be of help. I am praying for you too. I recommend calling her back pronto or emailing her. Or ask for the secretary. 

    Hopefully you will have some clear answers soon. Have you had any tests done recently? If so what were the results? Regarding the new diagnosis, ask her to explain to you why. Have a short list of questions to ask her. You can find a contact number to call up on all your appointment letters located right at the bottom of the letter. Make some brief notes during the phone call as a means of future reference and also for your peace of mind. Feel free to ask us additional questions if you need to do so. 

    Start with your family doctor. Ask him or her for a referral pronto. My advice is to find another good specialist who can help you to figure out exactly what to do. Let us know what happens next. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,680 Disability Gamechanger
    Hi @Mothermary, really sorry to hear about your current housing situation! This cannot be easy. Have you been able to get in touch with the council? They should be able to offer support.
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  • littlecheflittlechef Member Posts: 63 Courageous
    @April2018mom
    Thank you for your message I received a letter today from my neurologist saying that she is going to send a referral to Dr Jacob at the QE Hospital in Birmingham I understand he specialis in MG also my own doctors need to sort out my breathing problems asap but I think this as been done but waiting for my appointment.but with the current situation everything is on hold 
    She still says she don't think it's MG then she says that I need to inform the DVLA about my MG condition it all very confusing .
    I have had the fine needle test and that come back positive saying the I had some weakness and no reaction under my left eye , I have also had stroke like symptoms with mouth and voice so no one can understand what I was saying I'm also very tired no matter how much sleep I have , dizziness and light headedness that feels like I'm drunk and had none .
    Hopefully I will get my appointment soon but hospitals are not taking any appointments with CODIV19 .
    Sorry if I gone on 
    Take care everyone.
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