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Thread: any advice please

  1. #21
    Forum Member Lynne K's Avatar
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    Hi Tap' as you can see by my sign off my first symptoms were a gradual loss of balance over three or four years, next was a slight difficulty opening jars, using a tin opener and fastening small buttons (my pinch grip getting weaker) and around the same time a very slight slurring of words when I was tired. Those started about three years ago. I'm still using both hand and talking but both have deteriorated. My leg muscles are tight and stiff making movement clumsy but I still just about walk with a four wheeled walker indoors and slowly out to our cars but the loss of balance is the biggest issue. I have to lean forwards over the walker or else I'd tumble one way or other. A very cruel disease indeed but there's people more unlucky than me who have a faster degeneration. I have the C9ORF72 gene fault. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  2. #22
    Forum Member Terry's Avatar
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    Quote Originally Posted by TAPG1 View Post
    Can anyone give me advise please. I've been told that you can't feel muscle twitching only see it, is this true! Also has anyone experienced retching or sweating in the mornings? I'm told this is not a common symptom. What is the average age to be diagnosed? I'm 46yr old female
    Hi TAPG1,

    You can feel and see most twitching parts of muscles but sweating and retching are not signs of Mnd.

    Love Terry

  3. #23
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    Hi, Just an update in case anybody is wondering how l got on! I had my apt Thursday with a neuroloigs who specialises in mnd. She listened to my story and did a reflex test on knees and arms told me that was normal and l didnt have muscle wastage in these areas as the reflex test was normal. I didnt ask how she knew this as l to afraid and couldn't talk so still none the wiser. I explained about the twitching & fasciculation, the tingling in my leg/foot and sometimes in my thumb and index finger also the pain in my upper legs but was told that tingling or pain is not generally a symptom! I'm still none the wiser what's right and what's wrong oh and that my cough is due to a dry mouth. I'm not saying for one minute that l don't have anxiety because l do so l don't need to be told that. It's very hard not to when you feel like this and feel that nobody is listening and putting it down to anxiety. Has anyone went to a neurologist and not had the twitching and fasciculations looked at? I was also told that twitching in your chin is not a symptom. If anyone can advise me on what to do from here or if you have experienced any of what l am l would greatly appreciate it. God bless.

  4. #24
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    And that shaking is not a symptom either. Please don't tell me lm on the wrong forum because l don't think l am.

  5. #25
    Forum Member Terry's Avatar
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    Hi TAPG1;

    I do think you're on the wrong forum but you are welcome here. You should write your questions down for the specialists and doctors, to try to make sure you get answers.

    Quite a few of your symptoms seem unusual for Mnd and the way it starts.

    Love Terry

  6. #26
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    Thank you for welcoming me Terry and listening to me. When you say you think lm on the wrong forum is it because of my anxiety? Also if you don't mind can you tell me why you would say quite a few of my symptoms seem unusual for MBD and the way it starts. I have had MRI of the brain and Cspine and was queried MS but it's not that. I do know anxiety can play terrible tricks on your health but lm not imagining my symptoms or seeing the fasciculations...Everyone's stories and symptoms are different. I thought by joining this forum and chatting to people about symptoms or how they felt might help. I was told that thexretching/nausea lm experiencing is not related. Thanks Terry.

  7. #27
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    Is there anyone line that can advise me where to go from here or what to do please. Also has anyone's creatinine levels rose with MND? Any advise would be very much appreciated.

  8. #28
    Forum Member Ellie's Avatar
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    Thanks for update TAPG.

    Itís very, very good to hear that the Neurologist, who specialises in MND, has said that you do not have MND - that ought to be a huge relief to you.

    Quote Originally Posted by TAPG1 View Post
    I didnt ask how she knew this as l to afraid and couldn't talk so still none the wiser.
    She knew this because she is very experienced and deals with MND week in, week out.

    Motor Neurone Disease is a disease affects the motor neurons - tingling is a sensory symptom, not a motor symptom. Pain is not usually a presenting symptom either, as your Neurologist said

    Twitching without clinical weakness points away from MND - you donít have clinical weakness, as evidenced by the Neurologist. So, now the focus needs to be on what exactly IS the cause of your twitching, tingling and pain, and you need to go back to your GP as well as continuing to engage with Mental Health Services.

    After all this, you donít need to be part of a forum whose sole focus is Motor Neurone Disease. If you genuinely cannot accept the opinion of an MND Specialist Neurologist, I donít know what comfort you will get from continuing to post on here and trying to convince both us and yourself that you do have MND - I mean that in a caring way.

    I truly hope you get to the bottom of your health issues because, as I and others diagnosed with the terminal illness of MND know only too well, life is too precious to spend in a constant state of turmoil.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  9. #29
    Forum Member Ellie's Avatar
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    Re Creatinine Blood Levels:

    My creatinine levels are always LOW, as is to be expected in someoneone with a low muscle mass due to atrophy caused by me having MND.

    My last level was 28 umol/L where the normal range for me is 45-84.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  10. #30
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    Thank you Ellie. Just one think lm not trying to convince anyone on this forum or anywhere else that l have MND l find that very upsetting actually. I asked some questions re symptoms and neurology tests and also some advise as to where l should go from here as all of ye are the people who know best. I suppose for me it's hard to accept that muscle twitching/fasciculations, pain and swaying are not always symptoms of it and because lve had these for the last few months it's now stuck in my head. You also read people's stories on the internet saying that they were back and forth to neurologist before they were diagnoised and yes l know we shouldn't always believe everything we read on the internet. I just can't understand how the twitching/fasciculations weren't looked at and l suppose that's my fault l should have asked. Thank you for the reply about the creatinine levels Ellie mine was 88 so that's a bit up but probably nothing to worry about. I wish you the best and God bless.

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