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    Worried

    Hi all and thanks for letting me join the forum.
    My symptoms started 8 months ago with twitching in legs, arms and other places,so I went to go who worried me and I've gone into a tailspin.
    I was diagnosed with multiple sclerosis in 2018 so that's a pain to cope with.
    So in January I had an appointment with my neurologist for my MS check up and mentioned how concerned I was about the twitching, he told me he wasn't concerned. Unfortunately this did not reassure me.
    So I paid privately to see him about ongoing symptoms and saw him on weds last week. Again he wasn't concerned. I was really worried about my speech because since March I have noticed I am muddling up words, I can hear it but no one else has pulled me up on it. Neurologists letter, which I have received this morning has said that speech and articulation fine.
    Since I saw neurologist I have been having shortness of breath where it feels I can't get a satisfying deep breath, and the other night I had dribbled in my sleep. I'm now worried that I managed to spill some ice lolly out of my mouth and with all these other things still make me worry about MND.
    I just feel so anxious all the time.
    Thanks for reading.

    #2
    Dear Doodles,

    I am sorry to hear that you are feeling very anxious over the fasciculations you are experiencing.
    Many people who are diagnosed with Multiple Sclerosis do experience fasciculations and the more stressed and worried people become the more this will exacerbate the fasciculations.
    I know that fasciculations are probably more associated with Motor Neurone Disease (MND) than Multiple Sclerosis (MS) so I can understand why you feel so worried that you may have MND as well.
    You have described a feeling of shortness of breath, has this happened suddenly and is it all the time? Does this happen more when you are lying down or on exertion?
    The problems associated with breathing in MND usually happen gradually and may begin with symptoms such as headaches, difficulty sleeping or daytime sleepiness, as well as shortness of breath.
    Can you speak to your Neurologist about these new symptoms? Alternatively, you have the right to a second opinion, your GP can refer you to a different Neurologist if you don’t feel confident your current Neurologist is listening to you.
    Would you like to give the MND helpline a call on 0808 802 6262 as we may be able to ask you questions which may help to determine if a second opinion would be of benefit to you.
    With kind regards
    Jacqui Anderson
    Senior MND Connect Adviser
    MND Connect
    Contact us on 0808 802 6262 or at [email protected]

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      #3
      Hi jacqui
      Thanks for replying, I appreciate it.
      I think the more anxious I become the breathing thing happens, I would say it comes and goes.
      I emailed my neurologist secretary about these breathing issues and he isn't concerned, he felt my breathing whilst I was there, and gave me a check over neurologically.
      I do trust him but suffer with severe health anxiety so it's difficult to be reassured. I don't think my gp will refer me again, because my neurologist has put in his letter he is 'certain' that I am OK.
      He has also heard me speak and says speech is normal but I can still hear that I'm tripping up over words. He also noted no dystharia. He said it would be exceedingly rare to have both and he's never seen it in 30 years of being a neurologist.
      So really feel stuck in limbo now.

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