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    #16
    Hello Daniel,

    May I add my welcome and my good wishes?

    I can quite understand it is a worrying time, but as has been said above, do take things one step at a time.

    Have you been put in touch with anybody in MND Association locally to you?

    It may be there is a visitor who might be able to help you through the process of deciding if you have MND?

    You mention muscle weakness and fasiculation (shivering) , but I wonder if you have one of the other obvious signs with the weakness in your arms being the loss of the grip between your forefinger and thumb?

    That was the 1st thing I noticed and led to my diagnosis through the stages mentioned above (MRI, scan, lumbar puncture, electrical test).

    As others have said, do not hesitate to ask questions here

    Best

    Andy
    Warmly


    Andy

    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

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      #17
      Originally posted by Jaxx View Post
      Hello Daniel, sorry you find yourself on this forum, hopefully they will diagnose something else, I will keep my fingers crossed, I’m the Mum my daughter was diagnosed Sept 17 a couple of months after having her second baby and had an 8 yr old daughter so I appreciate what you must be feeling.
      Thank you for reply and what sad news about your daughter and the effects on your family. How do you manage. I am constantly in bits when I think of the potential implications on my daughter. Like you say a similar age to your eldest grand child. You must have had to be so strong to support them all x

      Daniel

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        #18
        Originally posted by nunhead_man View Post
        Hello Daniel,

        May I add my welcome and my good wishes?

        I can quite understand it is a worrying time, but as has been said above, do take things one step at a time.

        Have you been put in touch with anybody in MND Association locally to you?

        It may be there is a visitor who might be able to help you through the process of deciding if you have MND?

        You mention muscle weakness and fasiculation (shivering) , but I wonder if you have one of the other obvious signs with the weakness in your arms being the loss of the grip between your forefinger and thumb?

        That was the 1st thing I noticed and led to my diagnosis through the stages mentioned above (MRI, scan, lumbar puncture, electrical test).

        As others have said, do not hesitate to ask questions here

        Best

        Andy
        Andy thank you for your reply. I have the weakness between my forefinger and thumb on both hands. My symptoms are progressing they may be more obvious to the consultant when he reviews my MRI.

        Daniel

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          #19
          Hi Daniel,

          I'm sorry you are so anxious about your symptoms. I think MND is way down the list of possibilities of what is causing your weak feeling muscles. ALS/MND doesn't present as you describe.

          What clinical tests did the Neurologist carry out during your visit and what feedback did he give you?

          Your job in the ambulance service must be very stressful and physical too if you're frontline ambulance staff.

          I hope the MRI can identify what is causing you to feel your muscles are weak - with MND muscles don't feel any different, they just don't work, so it's good that you haven't described muscles failing.

          I wish you all the best and hope you don't have to wait long for your MRI appt.

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

          Comment


            #20
            Originally posted by Ellie View Post
            Hi Daniel,

            I'm sorry you are so anxious about your symptoms. I think MND is way down the list of possibilities of what is causing your weak feeling muscles. ALS/MND doesn't present as you describe.

            What clinical tests did the Neurologist carry out during your visit and what feedback did he give you?

            Your job in the ambulance service must be very stressful and physical too if you're frontline ambulance staff.

            I hope the MRI can identify what is causing you to feel your muscles are weak - with MND muscles don't feel any different, they just don't work, so it's good that you haven't described muscles failing.

            I wish you all the best and hope you don't have to wait long for your MRI appt.

            Love Ellie.
            Thank you Ellie,

            I do work front line but am off at the moment due to my neurology assessments. It can be stressful. I have done it for nearly 16 years. There are always the jobs that effect you and often the ones that most people wouldn't expect.

            Daniel

            Comment


              #21
              Hello Daniel. I'm sorry to hear about your symptoms and the anxiety they are causing you.

              I thought I'd tell you about my husband's symptoms. He had a few falls then became less mobile day by day. His right foot gradually turned out. His feet and legs swelled and he got very red knees.

              He never felt any weakness and even though he cannot walk a step he has no muscle wastage.

              He was diagnosed after exhaustive tests and 2 emg's.

              I wonder if occupational health ( as it was called in my day!) may help. Could they speed things up for you or provide emotional support.

              I wish you well, we never expected an mnd diagnosis but the support we have had has been brilliant. Please try not to worry too much.

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                #22
                Thank you to everyone for your kind wishes and support. I have an MRI scan booked for tomorrow and nerve conduction tests on Friday.

                Daniel

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                  #23
                  thinking of you Daniel. when Mick had his emg we got result same day because he was in patient

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                    #24
                    Good wishes for the MRI scan today

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                      #25
                      Good luck with your tests Daniel, I hope you get some answers soon.

                      Love Debbie

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                        #26
                        Thinking of you Daniel.

                        Hopefully you will get a follow-up appointment with your neurologist quickly, so that you can get the results of the tests as soon as possible.

                        I hope that you are still able to enjoy some quality time with you friends and family, despite this being a very anxious time for you. Your GP might be able to prescribe some medication to ease your anxiety and/or refer you for some counselling, if you would like some.

                        Love
                        Kayleigh xx

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                          #27
                          Kayleigh,
                          The MRI didn't go to well as I did not cope with the feeling of being so enclosed. It was heightened by my anxiety and I kept twitching. They had to stop. I am going back tomorrow for a second attempt. I am on Mirtazapine for my depression. I am in such a mess. I can not lift or grip as well as I could and am getting cramps and fasciculations at night. I understand all that everyone goes through on here and am inspired by your ability to carry on. I am hoping I too will find some inner strength soon to try and steady my fears and nerves.

                          Daniel

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                            #28
                            Hi Daniel,

                            I'm sorry to hear that the MRI didn't go too well today. When I had my MRI there was some music playing in the scanner which helped to relax me - but perhaps not all scanners have that option.

                            If you can, try to relax tomorrow. I know its not easy, but during the scan try think about something enjoyable that you are going to do with your family in the evening or at the weekend. Perhaps plan something to do with your daughter when she gets home from school tomorrow, like watching her favourite DVD with her. Once you are in the scanner, try to think of the scan as being something that won't take long - it will soon be finished and this is the countdown to it being out of the way.

                            I know from experience that MRI and other tests are not easy to deal with. It is completely understandable why you are anxious about them - but it will be good to get the tests out of the way, as they are one step closer to finding out what is causing your symptoms. Please try to remember that there are lots of possibilities for the cause of your symptoms. Try to go with the flow of things and wait to hear what your neurologistist says at your follow-up appointment, rather than jumping to any conclusions.

                            I know its not easy, but try to take one day at a time if you can. I can understand why you are anxious about tomorrow. Perhaps there are things you can plan to do with your family or friends at the weekend, so that you can look forward to spending quality time with them, rather than worrying too much.

                            Although my diagnosis was not what I hoped for, life goes on for me and my family. I manage to enjoy quality time with family and friends, especially in the evenings and at the weekends, when they are not at work or school etc.

                            If you can keep occupied, focusing on the things you can still do rather than what you find difficult to do, then that might help with taking your mind off medical worries.

                            Even every-day things, like asking your daughter to read some of her school reading book to you, are great things to keep occupied with - you will both enjoy her reading to you, and it will help to take your mind off your symptoms for a while.

                            Please try to take one day at a time. Remember that you can always go back to your GP for advice if you find that you are still anxious, although you are taking anti-depressants. Sometimes medication needs to be adjusted by a GP, so that depression and/or anxiety can be treated effectively. Also, sometimes it takes a little while for anti-depressants to kick in fully, but hopefully your GP has already advised you about this. Please don't hesitate to go back to your GP if you need further advice about controlling your anxiety/depression - GPs are there to give us on-going support.

                            If you would like to talk to someone, there is the MND helpline, and also the Samaritans offer support on the telephone to anyone going through a stressful or tough time in their life. The telephone number for the Samaritans is at the end of the 'MNDA Connect helpline' webpage:-

                            http://https://www.mndassociation.org/getting-support/mnd-connect/

                            Hopefully everything will go ok at the hospital tomorrow. Try to focus on all the good things and wonderful people in your life - the power of positive thinking, together with the love and support from family and friends, can get us through the toughest of times.

                            Please be kind to yourself - despite all your worries, you are being brave and doing everything you can to cope with this challenging time in your life.

                            I hope you have a relaxing evening and that everything goes smoothly for you tomorrow.

                            Love
                            Kayleigh x
                            Last edited by Kayleigh; 21 March 2019, 19:18.

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                              #29
                              it must have felt very claustrophobic for you. when Mick had his last March the gp gave him something to take that relaxed him. take care

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                                #30
                                Hi Daniel! I am sorry things didn't go too well at the hospital today. I hope you will be ok tomorrow. I suffer terribly with very bad anxiety as well! the doctor is trying me on Sertraline but last night my bottom lip swelled up (I actually resembled Mick Jagger!!!) So I have stopped taking them.
                                I wish you the very best of luck for tomorrow! Like Kayleigh said, it's best to try and take each and everyday as it comes. That's what my husband and son says to me all the time.

                                Best wishes!

                                Sheila

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