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    Mnd symptoms for 10 months

    Hi , I've been having what I thinck is progressive mnd symptons for last 10 months , these are muscle fasiculation, muscle cramping, problems swallowing, brain fog in morning, aching muscles in ankles and shoulder ,cramping in hands when working, perceived slurred speach, I had a full extensive emg and nerve conduction test carried out on all muscle groups in November 2020 , this came back as normal, it is now August 2021 , would it be wise to have second private emg test carried out as I am concerned about this


    Many thanks
    Craig

    #2
    Hi Craig,
    Only a doctor / consultant can make a diagnosis of MND .If you feel these symptoms are progressive it might be better to go back to GP and ask if you should be referred to a consultant..The symptoms might not be MND .
    Good luck
    Mary

    Comment


      #3
      Hello Craig. Neuro conditions can difficult to diagnose and can mimick other conditions. Did you get follow up letter from neurologist?

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        #4
        My consultant a professor mike douglass , said after for clinical work up was done and bloods and emg and nerve conduction test came back clear , not mnd ,so I am wondering what it is.

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          #5
          Originally posted by Cae1977 View Post
          would it be wise to have second private emg test carried out as I am concerned about this
          That is entirely up to you Craig.

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

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            #6
            It must be be good that that he doesn't doesn't think mnd. Maybe could go to go back to gp and tell them your concerns?

            Comment


              #7
              Hello Craig,
              Sounds like you are almost convinced that you have MND. While it may be true or not when folks do that it tends to cause a lot of stress and anxiety. Not a good place to park. A fellow told me once that keeping one foot on yesterday and the other foot on tomorrow makes it inevitable that I will be pissing all over today. It really is true, because we worry about those symptoms and what they may be, and it crushes us in our day-to-day lives.

              Meanwhile, what do we do about it? We educate ourselves. When the EMG comes back normal, it is a really good sign. But the problems may persist, so the rule is to wait and watch. I had to get 8 EMGs over the years before they figured out what was going on with me. Unfortunately, my progression was so slow it took them years to figure out that I had MND.

              There are many different things that must be ruled out before they can rule in MND. It sounds like the Neuro sent you back to your provider pretty quickly. Ask the provider to run the tests to rule out other conditions that mimic ALS. If the symptoms persist and your provider cannot find any answers, you will likely be sent back to the Neurologist. I did that 3 times over 5 years!

              In the meantime, love life. All the worry and stress and anxiety over this is not worth what it does to one in the long run. Whatever will be, will be, and all that worrying will not change a thing. Talking about what's going on inside your head is a good way to let it out and get positive feedback. Be happy and enjoy life.

              Comment


                #8
                Many thanks johnny 5 , it's just a big worry at moment, I'm a 43 year old bloke , I've kept myself very fit all my life , never smoked , dont really drink and I work as a self employed gas engineer, some days my hands seem to cramp up when I'm on the tools , i might give it till October then have another emg test and see what happens.

                All the very best

                Craig

                Comment


                  #9
                  Hi everyone , my original consultant has sent me for a second opinion with another neurologist even though he has said absolutely not mnd , so it's made me wonder why he has sent me for a second opinion, also another symptom I have had for last 10 months is a horrible sweet metalic taste in mouth constantly that has never gone away .

                  Many thanks everyone

                  God bless

                  Craig

                  Comment


                    #10
                    Good luck with the second opinion appointment coming to you quickly Craig and that they get to the bottom of what’s happening to you. Lynne
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                    I'm staying positive and taking each day as it comes.

                    Comment


                      #11
                      You posted symptoms: "muscle fasiculation, muscle cramping, problems swallowing, brain fog in morning, aching muscles in ankles and shoulder ,cramping in hands when working, perceived slurred speach"

                      A lot of conditions could cause these. To rule IN MND you must first rule OUT everything that could cause all of the symptoms. ALS mimics are a fairly large list, so if they can rule OUT the ALS, it could be something else still, just not fatal. Symptoms that are persistent spell out problems, random fasciculations, or cramps are not problems. Swallowing and speech issues could be an issue in the brain, or not, or something else that causes bulbar dysfunction. There may be a lot of other things going on, like toxic exposure, that would also be attributable to the symptoms. I am not a doctor, but to my knowledge, the road you are on to figure out the cause of your symptoms is in the right direction.

                      Here is a link to give you a little exposure to how many things fall under this category, and the intensity of the topic we are talking about. Yes, do what the pro's tell you. They are the ones trained to figure this out.

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                        #12
                        Hi johhny

                        I.hope you're well , I've spoken to the neurologist today who carried out the extensive emg nerve conduction studies in october today , he has said it is very highly unlikely that there would be any change if another one is carried out , my emg nerve studies came back as normal and no evidence of mnd , I just hope he is right .

                        Many thanks

                        God bless

                        Craig

                        Comment


                          #13
                          That, Sir, is very good news indeed!

                          Comment


                            #14
                            Even if it was done in october 2020,I wonder if it was done to early.

                            Comment


                              #15
                              Hi Craig
                              So glad for you it’s not MND.
                              Mary

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