Announcement

Collapse
No announcement yet.

Can I ask some questions?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #16
    Originally posted by Zante View Post
    If the neurophysiology consultant who did the ncs and emg test told me there was no lower motor neuron signs that he could detect does this mean I definitely can rule out mnd? I asked him outright and he said no there weren't any lmn signs. He said he could also rule out diseases of muscles like myositis and muscular dystrophy etc. He said the report will be sent to the neurology consultant I am seeing and I will then be called in for next appointment with neurology. I couldn't get a copy of the report as it wasn't done and he didn't explain any results or tell me anything and I didn't ask apart from lmn question. So I am now perplexed! I have been diagnosed so far with upper motor neuron signs and one leg weakness. And upward plantar reflex etc only on one side. Brisk reflexes and increased muscle tone both legs. Brisk reflexes in upper limbs also. Mri was clear of brain and spine. So I assume that means not ms and no tumors. Please may I ask if anyone knows can mnd be only umn signs and not lower also ? I thought u had to have both? Sorry to ask questions before appt but I am struggling to get to grips with this. I haven't noticed any changes in the last couple of months apart from feeling clumsy with hands. Doesn't feel weak at all just dropping a lot and finding picking up small things off a table seems quite a task. Thank you for reading.
    Best wishes from Zante. Ps no date yet for next appointment.
    Hi Zante, Iโ€™m so sorry you have these anxieties but nobody here can answer those questions for you. Iโ€™m afraid youโ€™re going to have to wait until next appointment with the neurologist. See if you can speed that up a bit. Best wishes.
    Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

    Comment


      #17
      It's normal to wish for anything other than MND. It's not normal to wish for MND.
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

      Comment


        #18
        Matthew if you think that I am wishing for mnd then am sorry but u have totally read everything I have put with a very wrong perception. I can't think of the words to write to say how so damn wrong you are. I can't believe you wrote that.

        Comment


          #19
          I didn't mention your name so it wasn't about you Zante I apologise and am deeply sorry if I have caused you distress.
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

          Comment


            #20
            No u didn't write any names but wrote the comment on a post I wrote and after I had written an entry! Apologies accepted. I am a very sensitive person and that made me remember why I stay clear of any social media or forums etc and this was my first attempt. Thank u

            Comment


              #21
              Have just read back over what I put yesterday and I think I could have worded the phrase... I thought u had to have both... better! I meant I was clinging onto the hope that it can't be mnd as I don't have lower motor signs and only upper. I certainly don't want lower! And as soon as he said I didn't then I rushed into into toilet and burst into tears with such relief! But I literally was just checking for my own peace of mind that anyone here didn't have only upper. Probably unfair of me to ask. Sorry.

              Comment


                #22
                Hi Zante,any news on neurology appointment yet.Anxiety can be very helming.I remember how I felt pre diagnosis and it was overwhelming.Symptoms got worse and I imagined I had all sorts of things wrong.I lost weight as didnโ€™t have an appetite either.
                I hope you donโ€™t have to wait much longer to see a neurologist.
                Have a good day
                Mary

                Comment


                  #23
                  Thanks Mary I had the emg and ncs 2 weeks ago so am now just waiting to hear about the follow up appointment with neurology consultant. Symptoms aren't getting worse which is good. Just small changes in my hands feeling clumsy. And only had 2 falls this month which is an improvement! Foot scuffs along the floor at times so I trip fron that not falling due to weakness. Its anxious tines when waiting and trying to figure out what's happening to you when u don't know is horrid and not knowing what to do to help yourself get better or improve. Best wishes.

                  Comment


                    #24
                    Hi Zante

                    I'm sorry to hear about the concerns that you have. Unfortunately only your neurologist can answer your questions about your test results although it sounds as though nothing abnormal was detected which is certainly a positive thing and hopefully a reassurance for you.

                    The majority of our forum members are people living with MND and so it can be quite upsetting and difficult for them when people post about worries that they have about having MND. The forum is here for everyone to use but you may find that some members understandably find it difficult when someone wants to discuss possible symptoms and test results as they are living every day with this horrendous disease.

                    We are here to support you in any way that we can so please do feel free to give us a call on 0808 802 6262 Monday-Friday 9am-5pm. Sometimes it can be helpful just to talk through your concerns.

                    Best Wishes

                    Rachel
                    MND Connect Adviser
                    MND Connect
                    Contact us on 0808 802 6262 or at [email protected]

                    Comment


                      #25
                      Hello Zante, so sorry you have this distressing wait. Could you phone your neurologists secretary and ask them to hurry things along?
                      When my husband was in hospital having a battery of tests he went for and emg. Both of us had no clue about MND. However when he returned from the test he was worried he'd upset the nurse as she'd gone from laughing and joking to very serious and he thought it was something he'd said. When he got the diagnosis from the neurologist we realised what had happened.
                      I really hope you get answers and there is nothing horrible going on.

                      Comment


                        #26
                        Hi Zante,

                        It is good that you found someplace that you can communicate what you are going through. The best therapy is talking, and this is where you can let it all out. ALS is a scary thing, I think all of us here can attest to that fact. Sometimes it takes more than a year to get a proper diagnosis, and that does not help. In the meantime, it is natural to freak out. Stress is a monster, and the anxiety of not knowing is a two-edged sword that cuts into everything in your life. The best thing is to talk about it, and that you are doing so you are not stuffing all of that and making it worse.

                        Comment


                          #27
                          Stress is a cold stone killer
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

                          Comment


                            #28
                            Thank you all for the replies. Much appreciated. Firstly I want to say I am very sorry if I have upset anyone for posting on here. I wouldn't ever want to cause any distress by asking questions and raising my fears etc. Really is the last thing I would ever wanted to have done. So am sorry if people on the forum find it difficult. I haven't looked for symptoms or read into anything that isn't there!! Basically repeating what Dr and neurologist said to me and wrote on the diagnosis letter which I was copied into. The neurologist said upper motor neuron damage /signs can be caused by only a handful of diseases/disorders and that she will get to the bottom of it and help and that it was a matter of testing until u r left with a cause. And its the fact that the mri was clear and the bloods were clear. Gotten me a little worried when Dr suspected mnd all along. Until the neurologist told me that was the reason for referral I hadn't ever considered it at all because I feel too well for that and also because I have no wasting of muscles at all. The legs look slightly different as in the muscles appear more formed but certainly no wasting. I can still walk miles and yet haven't got the power to put my leg up 2 steps at a time which sounds bizarre but the way it is. I am now just waiting for next appointment. I do have days when I worry and other days when am fine and am adamant it can't be mnd! Just got to wait which am sure all of u know how difficult it is and seems forever when its not! Thank u for listening. And I am so sorry again if I have caused any upset. Sorry.

                            Comment


                              #29
                              It only goes to show that life is short Zante and you need to get cracking in whatever you are doing!
                              Copyright Graham

                              Comment


                                #30
                                Upper motor neuron signs could indicate possible Primary Lateral Sclerosis (I am not a medical professional, so leave the actual diagnosis up to your doctor). The good news is that PLS is not the same as ALS. The bad news is that it may take several years for them to confirm it. It also will allow you to live out your life, so it's not termianal.

                                Google PLS, educate yourself, and relax. I did. God is running the show. Take a breath and enjoy family time. Walk the dog if you have one, or even go for a long walk by yourself. I love to stroll in the park (more like hobble with my cane now), sit on a bench and watch the children play. Kids are so smart! No lower motor neuron signs are a good thing. Celebrate and be happy!

                                Comment

                                Working...
                                X