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Fao tapg1 and jordan

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    Fao tapg1 and jordan

    Hi folks. I am sorry to post again. I am very conscious that this forum is for people who are affected by this dreadful disease and I have mentioned that before so I want to be respectful as possible as someone who is fortunate enough to hopefully not be.

    I have read both your concerns in depth especially about twitching and a few weeks ago I was equally as anxious as you. Ellie has mentioned a few times that minus clinical weakness, twitches are highly unlikely to be MND.

    6 Weeks ago, I felt my hands and legs were stiff, weak and when I walked it was like walking through treacle. Like you two, I consulted Dr Google and had myself self diagnosed, very similarly to what Ellie has mentioned in regards to TAPG, almost identical in fact.

    Somehow I have managed to pull myself together and although I go for a MRI on Friday, I am not as anxious as I was, primarily as my obsession about the twitches has diminished and consequently they have decreased almost to the point of stopping.

    I did some research and applied a bit of common sense. I have almost stopped caffeine which I had far to much of each day. I had recently been introduced to a Sertraline anti depressant and I established that almost all anti d's can cause twitching, particularly in the infancy of being introduced to them. As we all know, anxiety also increases them. I was actually sitting staring at my muscles in a state of high angst waiting on them twitching which is ludicrous and completely irrational as we all know.

    I also periodically take prescribed codeine for an old shoulder injury which causes me hassle on occasion, especially when the weather is colder. I broke it and disclocated it at the same time when playing football around ten years ago. I found an academic piece online which suggested there could be a link between codeine and sertraline which could cause twitching if taken together by increasing serotonin level to a to high level that again causes twitching.

    I decided to stop taking sertraline as a process of elimination as I had only taken it a short while, to short really to have instigated improvement in my angst. This in conjunction with reducing caffeine has really reduced the twitching, almost to the point of it stopping. I am lucky if it happens once a day.

    As my anxiety has reduced, my perceived problem motor wise in my hands and feet has gone. I think I may have had BFS which was accompanied by a perceived weakness which although felt real when push came to shove didn't actually stop me from performing the task. One night I was moving a wardrobe down the stairs with my wife and I 'felt weak'. really weak in fact but we still managed it.

    Just a little bit to think about. Good luck

    Hi Anxious;

    It's a good idea that you have started this thread for what seems to be similar people who hopefully don't have Mnd.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.


      I have to politely disagree with you Terry - threads like this only add fuel to people's (already crippling) anxieties, which isn't a positive thing

      Love Ellie.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


        Hi Terry and Ellie. Thanks for your comments. I respect your view Ellie and I am sorry to disagree. These two people were crippled by an anxiety, similar to the one I was and their feelings seemed to mirror mine at the point I was incredibly anxious recently.

        By no means am I saying this resolves any issues. However, I think I am correct in reading that you thought both of these folks primary concern was probably that of general health anxiety rather than literal, clinical presentation of MND in it's earlier stage. I respect completely that your experience means you know far more about this than me and I don't mean that disrespectfully. As you will know I posted previously in a previous thread that you and Terry's attitude was very inspiring.

        I simply thought that having been on a similar anxiety path recently that these two peoples angst could potentially be lessened if they were making the same 'mistakes' as me and wanted to take anything from my improvement. as a source of reassurance.

        No offence intended. This forum will bring folk to it seeking reassurance, be it rationally concerned or irrationally worried. Although you have previously stated this is not a generalized anxiety forum which I agree with, the source of that angst is a worry in regards to this topic. My post was with the intention of helping even a wee bit.

        Sorry to offend you.


          "Part 1: Community rules

          The forum is an online community for people living with or affected by MND to share experiences and support one another."

          We do try help everyone, but there does come a time when the Forum is no longer an appropriate place for some undiagnosed people to continue posting and seeking the type of support this Forum does not specialise in. That is obviously my opinion and my interpretation of the above rule.

          My fear is that some people will not seek proper, professional advice.
          Last edited by Ellie; 4 December 2019, 14:17.
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


            Anxious1, Thank you for the reply and lm so happy for you that your symptoms have decreased. I wish you all the best with your MRI also. As lve said in a previous post lm not going to post about myself or my new symptoms on here again. I'm sick of being told its mental health and anxiety. Anxious1 l hope you have a great Christmas and all the best.


              Hello Anxious1, thank you for making this thread, I’m just really scared of MND I finally got my referral to my neurologist but it’s a long wait it’s the 7th of January which is quite annoying as this is really upsetting me and I can’t relax and enjoy myself or be excited for Christmas and enjoy my partners pregnancy, I’m just genuinely scared but as terry said in my thread my symptoms have happened to rapidly to be MND, with me only being 23 I know my chances of getting MND are extremely low especially with it not being in my family either, but as I say I can’t understand how anxiety can cause so much symptoms, I’m also getting help off my doctor for my anxiety I’m taking fluoxetine currently I only started them 9 days ago I was on mirtazapine but had to come off them as the side effect to the mirtazapine was so effecting it was completely turning me into a zombie a hour after taking my dose as I was on 45 mg, I’m currently on 20mg so hopefully they will take effect and hopefully see symptoms subside but as I said I’m just scared and I keep having horrible dreams and thoughts

              Thanks again Jordan