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  • MNDConnect
    replied
    Hi Craig

    I am sorry that this is still a concern for you. The only person who can answer your questions is a neurologist. We are always happy to speak to you over the phone as sometimes it can help with your concerns so please do contact us if you need to on 0808 802 6262.

    Best Wishes

    Rachel

    Leave a comment:


  • Cae1977
    replied
    Hi mnd connect

    My neurologist has reffered to a dr srinivasan a specialist mnd neurologist at the mnd clinic in Birmingham queen Elizabeth hospital due to throat muscle weakness hypopharynx and pirifossa forma , I thinck they want to start the testing all over again , all that was found on the 2 emg tests were ulnar dysfunction and 4 x fasiculations on last emg , no other findings were found , would the last emg I.had off picked up something if it was there .there was a 9 month gap between the 1st emg and last one .

    All.the best

    Craig

    Leave a comment:


  • Johnny5
    replied
    Benign fasciculations are not to worry about. They may keep you up at night, but if they are not detected in an EMG, it probably is not MND. Swallowing difficulty can occur at any stage of Parkinson's disease (PD). There are other things that can cause these symptoms. Only a professional can properly diagnose your symptoms.

    Take a deep breath, and think about the compulsive nature of your inquiries. Obsessions like this can be considered a mild, yet troubling, mental health issue. Medical professionals deal with this type of thing every day, so gauge yourself. Do you trust your doctors? Then talk to them because they are the ones that are responsible to you. If you do not, find a new caretaker who you can trust. Write a log, and hand it over to your doctor. Let him worry about it.

    Leave a comment:


  • Ellie
    replied
    Originally posted by Cae1977 View Post
    ... all I want is a straight answer off someone
    You're looking in the wrong place - that's a Doctor's role, which is why you have to follow up with a medical professional.

    You're wasting your time by asking the same questions on this MND Forum over and over and over and over again because you simply cannot get that "straight answer" here.

    Leave a comment:


  • LindaB
    replied
    Cae1977 sorry you're having so much anxiety still....anxiety itself if prolonged is bound to effect your health. It's your health professionals you need to get back to until you feel satisfied with their conclusions.
    I will add this I believe we all hold stress and tension in various parts of our bodies...for example many people feel it most in their throat. So it becomes a vicious circle....

    Mindfulness can help manage these overwhelming thoughts. Speak to your GP.
    Good luck. πŸ‘

    Leave a comment:


  • matthew55
    replied
    It's cool but stop overthinking it πŸ‘πŸ˜πŸ€—πŸ˜xx

    Leave a comment:


  • Cae1977
    replied
    Many thanks Mary and mathew

    I totally understand what you are saying, I feel like I'm being passed from pillar to post between neuro and ent , all I want is a straight answer off someone ,I'm sorry if I've offended anyone , I'm just very worried 12 months on .

    God bless

    Craig

    Leave a comment:


  • matthew55
    replied
    Mary you really are a nice person. I just don't have what you got! πŸ€—πŸ‘πŸ˜πŸ˜xx

    Leave a comment:


  • Mary C
    replied
    Good morning Craig,
    Whilst I sympathise with you having such anxiety nobody on this forum can diagnose what your health problem is.

    Maybe your neurologist will look more in depth at your swallowing issues and come up with a treatment plan.Nobody on this site would know / suggest what further tests you now need as we aren’t qualified to.

    Really think you need to keep going back to Neurologist or ENT specialist to suggest the next step.

    You will increase your anxiety by reading posts on this site that don’t apply to your situation.
    Really hope you can gain some peace in your mind soon as you sound tormented by the not knowing exactly what’s wrong and if its treatable.

    Hope you get a worry free day..keep occupied .
    Best wishes
    Mary

    Leave a comment:


  • MNDConnect
    replied
    Hi Craig

    I'm sorry that this is still a concern for you. As you mention, we have discussed your symptoms in detail many times. Your symptoms do not suggest bulbar onset MND. You need to speak to your neurologist about your concerns.

    Best Wishes

    Rachel
    MND Connect Adviser

    Leave a comment:


  • matthew55
    replied
    Since you seem determined to have what I have so why not have mine? πŸ˜‰πŸ˜πŸ˜˜πŸ˜xx

    Leave a comment:


  • Cae1977
    replied
    Hi mnd connect

    Any advice would be hugely appreciated
    I've had a full barrium swallow test , and results have come back
    Hypopharynx muscle is not opening on right hand side
    And piriform fossa muscle is not opening on right hand side , ent confirm it's not cancer , but I should go back to my neuro as it could be nerve issue ,here are my exact symptoms to date
    problems swallowing most foods ,fluids are going down but feel like they are comeing back up into nasal passage .
    All over muscle fasiculation particularly round neck area and face after swallowing
    cramping in calfs and left ankle.
    Swallowing issues and muscle fasiculation started september 2021.

    Here are my neuro tests to date
    October 2020 full neuro clinical exam
    All normal

    November 2020
    emg /ncs all normal barring ulnar nerve dysfunction in both arms.
    emg test normal.

    August 2021 second opinion with different neurologist.
    Clinical exam normal

    August 2021 second emg/ncs
    ulnar dysfunction
    Emg found 4Γ— fasiculation in both shin and calf muscles , asked dr about this he said possible bfs , no evidence off mnd. I was elated.

    Barrium swallow test
    August 2021

    Results
    Hypopharynx muscle in throat
    Piroform fossa in throat not opening correctly
    No cancer found thankfully.
    ent adviced to go back to neuro to get 3rd opinion.
    I'm led to believe these muscles are bulbar muscles.
    my biggest worry is this is possible umn bulbar
    Would this off shown on emg results.

    I really do not know where to go next with this, as the swallowing is getting slowly worse, I have never had health worries in my life, but I feel I'm not getting to.bottom of what's going on .

    I have spoken to yourselfs a fair few time now ,my apologies, any advice is very much appreciated

    All ver best

    ​​​​​​​Craig

    Leave a comment:


  • Cae1977
    replied
    Good morning

    I've been to see ent consultant to day to discuss the results off my video barrium swallow test , all I got off him was there was no cancer ,but the one side off my throat muscle is not opening up correctly, hence the swallowing issues, he said I've never seen this before in 20 years of being a ent consultant, surely my 2 emg tests would of picked this up , so I'm no further forward in what's happening and still concerned about mnd, is there any further tests I.can.have or is the emg test the one to pick it up.

    Many thanks

    Craig

    Leave a comment:


  • Cae1977
    replied
    All due respect , theres nothing wrong with my mental health , I'm just concerned at the moment as swallowing is gradually getting worse , and yes indeed I've had 2 separate emg/ncs carried out over a 9 month gap and 2 separate neurologist clinical test with nothing found , I've never been worried about my health until this started over 12 months ago , I'm just hoping the swallow tests results come back as something that is not mnd related.

    All the very best

    Craig

    Leave a comment:


  • matthew55
    replied
    I can tell you that I am in my second year and am completely mute, my tounge is practically dead and I am 100% tube fed. My arms are wasted and my right hand is almost useless.

    Leave a comment:

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