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Thread: MND concerns, can't think straight

  1. #11

    Re: MND concerns, can't think straight

    Hi all,

    I wanted to write an update because I'm currently struggling a little bit. I mentioned above that I had a physio consult. It seems I was poorly informed by my GP as the back specialist that I was referred to wasn't a physiotherapist, and just talked about how too many people get MRIs and I shouldn't worry. She also was not sent my MRI results, so I felt very let down by the system.

    I have since then completed one-on-one mental health therapy - CBT. It was a lot of homework, but it did help somewhat. However, now that it has finished I feel down because I no longer have a therapist to speak with. I would have to self-admit to the service again which could be months.

    I'm still twitching to this day, but I had some good news, my EMG results returned and my 'Results were fairly unremarkable'. Great news! Except now for the past three months I cannot walk for even 3 minutes without pain. My left top of ankle, and my muscles that control lifting my foot up (around my shin) become very painful and tight. This has really set my anxiety back, this has been going on for a couple of months now but the duration that I can walk is getting less and less. So much so that I'm trying actively to stop thoughts that I have upper motor neuron disease, that couldn't be picked up on the EMG. Curiously, my foot absolutely wants to give up on the 3-5 minute walk to football on a Monday night, but I can play just fine. There's a mixture of walking, but also running on my toes. I even walked an entire 18 holes of golf which lasted roughly 4 hours with no pain. I'm hoping that this is 'All in my head' but it's becoming increasingly more difficult to believe this. Who can't walk for more than 3 minutes? My mum who has MS can even do that.
    Last edited by MyHeadHasGone; 24-05-22 at 17:21.

  2. #12
    Join Date
    Jun 2021
    Posts
    256

    Re: MND concerns, can't think straight

    Sending you a PM because I think if I post one more "Oh I get that too!" it'll just sound weird. The good news is we *both* can't have a ridiculously rare disease manifesting in a nonstandard way! (and as an aside, given that I do have a case of limited, genuinely documented, truly neurological-based failure, I'd vote for me being it, not you :P )

  3. #13

    Re: MND concerns, can't think straight

    I'm really struggling again tonight. I have been going to physio for my leg, and I'm going there tomorrow but my leg has not improved, I can only walk for bursts up to 2 minutes before it tightens up and it's increasingly painful to lift my foot. I've gotten back in touch with my neurologist, I did want a private consult but it's coming through the NHS which may take some time.

    I've been feeling my forearms tighten randomly when doing things, what has tipped me over the edge today is that I was trying to put my football boot on (because I'm on my toes, I can run and my leg doesn't hurt, unlike walking) and my left arm was super tight and painful. I couldn't replicate it and remembered that I shouldn't test for the sake of my mental health. I've gotten back home and obviously tested because I can't help myself and I'm probably at only 50% strength in my left finger. My worst area feels kind of 'weak'. I must admit that I've been feeling like getting toilet paper off the roll was a little different than usual, but I chalked it up to just thinking about it for the first time.

    I'm hoping that all of this is caused by the compromised nerve in my back but no professional so far has even been concerned about it. So I'm scared, this might be the worst point I've faced. I can't stop thinking the worst, I have no one to take care of me if the worst were to happen. Yes I'm lucky that I can move everything and no part of me has failed, but the bad thoughts have taken over.

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