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    Can I ask some questions?

    I am sorry to trouble you. I am hoping someone might be able to answer some questions or to explain if certain medical terminology is in anyway possibilities that motor neuron disease could be responsible. I was referred to neurology by my gp ( I found out from the neurologist that the gp suspected mnd). Very shortened version is I have had problems with exercise and also balance. I was an active runner and have had a few falls, unbalanced,legs feel rigid and stiff, one more than other, lower right leg won't now bend properly at bottom of leg. And legs feel a little weak especially going downhill and up steps etc. And this I have had for about 5 months. It all came on suddenly. The neurologist did an urgent mri the following day on brain and spine as she initially suspected spinal cord problems. The mri on spinal cord showed no issues. She also did a brain mri of which I don't know the results. She said she is now referring me for nerve conduction tests and an emg. Her letter says increased muscle tone in both legs, gegenhalten in both legs and positive babinski in right leg. And right leg weakness and upper motor neuron signs...I don't know what this all means. . I don't have any upper limb problems at all. I don't have any tremors or pins and needles. I get tired but don't feel ill apart from my legs not doing the job I want them to do!
    I am probably jumping to the worst case scenario but I am a little worried and just wanted to ask if this is in anyway a possibility of mnd or is the something totally unrelated and nobody had anything like this when going through diagnosis. I don't want to ask the wrong thing or expect people to have the time to reply much but I literally am wondering what is going on with me and if there are many other things that can cause the above. Sorry to write quite a bit. I am early 40s female. Thanks so much for reading.

    #2
    Hi Zante,
    well I am sorry you are feeling so stressed but understandably.It sounds as though you are going through the investigations to see if you do have MND or some other cause.At least you have a neurologist who is getting on with investigations including nerve conduction tests.
    There isn't one test for MND so therefore it’s a case of wait and see after investigations are completed.
    Many people on this site had a long wait before getting those tests done so hopefully you will get answers soon.
    I wouldn't attempt to try and explain the medical jargon .

    Awaiting a diagnosis is such a stressful time and I remember I rang the MND association helpline and talked through my scenario when I was waiting for tests like yourself.Whilst they couldn’t obviously give me a diagnosis the person on the helpline let me express how I was feeling and it did help.
    Really hope you get a good outcome
    Best wishes
    Mary

    Comment


      #3
      Thank you for replying Mary. Means a lot. I am hoping that the gp is wrong and isn't mnd. I wish I had more medical knowledge because the letter from neurologists had led me to Google which isn't a good idea!! I didn't know if the legs description and my right foot hitting the ground in a odd way is something some of yourselves ever encountered in the early stages. I guess this could be anything. Its scary though isn't it. The neurologist is excellent and everything happened very quickly for which I am very grateful for.
      thanks ever so much again.

      Comment


        #4
        Zante Sorry you're going through this.

        Did the Neurologist not tell you what she is looking for/at or what conditions are on or off the table? It's not up to you to have "medical knowledge" - that's your Neurologist's job and why she spent years in Uni and many more years becoming a Consultant Neurologist, don't put yourself down!

        When is your next appt?

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

        Comment


          #5
          Thanks Ellie.
          sorry am all new to posting on anything online so am learning as I go with this so apologies if I can't highlight anything etc!
          I am just waiting now for the ncs and emg appointment. I only saw the neurologist a week after seeing gp and the mri were the following day so it's all quite quick so can't complain I guess. She told me she was looking for something pushing onto spine but said after viewing mri that isn't the case. So next plan is for the ncs and emg and so I haven't actually seen her since the mri's but have read this on the letter. I don't honestly have a clue what they are looking for and what they suspect. Just that the initial thought was mnd at doctors. Just waiting for appointment next and no idea what sort of time frame that usually is.
          thanks for your reply. Best wishes.
          Last edited by Zante; 10 June 2021, 20:50.

          Comment


            #6
            Hello Zante. The thing is MND can take different forms. There are things that can mimmick which why I presume you were sent for MRI. It's understandable you've been scaring yourself silly but as Ellie suggested you've got to await tests, agonising as they seem. I wish you well and hope it transpires to be better news than you feared. xx

            Comment


              #7
              Hi Zante,

              Thank you for your forum post. I am so sorry to hear that you are going through the process of having diagnostic tests, this must understandably be very stressful for you.

              As explained by Mary C, unfortunately, there is no single definitive test to diagnose MND, and therefore it is really a process of elimination, whereby many tests are carried out in order to rule out other possible causes of symptoms.

              It’s understandable how you feel, waiting for answers can be so difficult and worrying. Please do know that we are here to support you. You are welcome to contact us on the helpline with any concerns or questions that you may have. Sometimes it can be really helpful to discuss your concerns through over the telephone. We are available on 0808 802 6262 Monday to Friday from 9am-5pm or you can contact us via email at [email protected]

              With kindest regards,
              Prachi
              MND Connect Adviser
              MND Connect
              Contact us on 0808 802 6262 or at [email protected]

              Comment


                #8
                Thank you very much for replies. Feel guilty posting on here when I haven't even been diagnosed. I will just wait until the next batch of tests and see how everything goes. Thank you for listening and giving advice. I am a little concerned but not overly anxious as I am aware numerous conditions can cause what's going on with me. Hopefully u won't see me again on here if u know what I mean !!

                Comment


                  #9
                  Hi Zante, sorry for your stress about your symptoms, the test descriptions and waiting for a definite diagnosis. I had similar balance issues and stiffness in my legs and my GP mentioned the terms that you describe but I had a delay in getting a diagnosis. The first neurologist I saw (after waiting about 9 months for the appointment) sent me for a spinal MRI and discharged me. About a year later I had a brain MRI and a series of muscle and nerve connection studies. When these were all back I got my diagnosis.

                  As I’m not medically trained I cannot offer more than my own experience. Please ask your GP or neurological to explain what the terms mean and what they’re looking for. Medical professionals sometimes withhold information if they think we don’t want to know, or we wouldn’t understand. But if you tell them you want to hear everything then you ought get more from them. Anything that you don’t understand ask about it. Take care, 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


                    #10
                    Lynne thank you. I am so sorry for everyone on here that is either suffering with the disease or caring for a loved one. Its really heartbreaking. I have obviously seen articles on the news about mnd and aware of some but it's not until you read about it in depth and how someone's body changes and the effects of the disease that u really only begin to understand the horror of it. I can't imagine how anyone copes to be honest. Thank you for sharing your experiences and thoughts. The muscle stiffness is most odd. It's like my legs have done a marathon daily and the muscles feel strange and so hard. A part of one leg won't bend which is difficult to explain. The fact that I waited almost 6 months to see if things improved before seeing gp was probably foolhardy of me ! But to then to see a neurologist and have brain and spinal mri all within 10 days of seeing the gp is brilliant timing I think compared to how long a lot have waited. I feel nervous but also not very anxious if that makes sense. Take care everyone and I just wanted to say how much I admire everyone. Thank u.

                    Comment


                      #11
                      Hi Zante, maybe have a chat to MND association .
                      Dont disappear of this site without letting us know when you get a diagnosis.We will be wondering how you got on and obviously hope it’s a better outcome than MND .If MND come back too as so much help is given on here.
                      Best wishes
                      Mary

                      Comment


                        #12
                        Originally posted by Zante View Post
                        Lynne thank you. I am so sorry for everyone on here that is either suffering with the disease or caring for a loved one. Its really heartbreaking. I have obviously seen articles on the news about mnd and aware of some but it's not until you read about it in depth and how someone's body changes and the effects of the disease that u really only begin to understand the horror of it. I can't imagine how anyone copes to be honest. Thank you for sharing your experiences and thoughts. The muscle stiffness is most odd. It's like my legs have done a marathon daily and the muscles feel strange and so hard. A part of one leg won't bend which is difficult to explain. The fact that I waited almost 6 months to see if things improved before seeing gp was probably foolhardy of me ! But to then to see a neurologist and have brain and spinal mri all within 10 days of seeing the gp is brilliant timing I think compared to how long a lot have waited. I feel nervous but also not very anxious if that makes sense. Take care everyone and I just wanted to say how much I admire everyone. Thank u.
                        You did get an amazingly fast response from the NHS Zante to what most of us had. About legs, as you will see by my signature notes that I was losing my balance for about 4 years before I sought professional input. I’m still, just about, wobbling around indoors using one of my two 4 wheeled walkers, but soon I’ll be wheelchair bound.

                        Thank you for your kind words. That’s how all of us are with each other. This is a very friendly and supportive community. Love Lynne x
                        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


                          #13
                          For both Mary and Lynne thank you. I promise to let you know the outcome. Not sure how long u usually wait for next set of tests ( I can hardly complain about the wait up til now ! ) . I know this sounds a very strange thing to say but if someone said its cancer or parkinsons I would feel relieved....and am very sorry to say that because they both are devastating for people.... but the mnd is so cruel isn't it. You must feel so vulnerable to the disease. I had been reading some of the material on here and would like to say the words and support u all have for each other... the time and effort it must take when you are struggling to cope yourselves but to then still be able to help others and be there is incredible and a huge testament to all of u. .... right I need to find a box of tissues!! Xxx

                          Comment


                            #14
                            Hugs Zante 🤗 🤗 🤗, Lynne x
                            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

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