Announcement

Collapse
No announcement yet.

Waiting for tests

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

    #16
    Hi Sarah. You want to feel like you're doing something positive. Most of us have felt like that. Do you know which hospial, which neuro? Can you phone the hospital and ask her/her secretary (medical secs most important folks in hosp) if they've got any cancellations for Dr x?

    Comment


      #17
      I will give them a call to see if they can do anything, thanks

      Comment


        #18
        I called and they said my appointment is 25th of august, they will call me if they have a cancellation. It’s worrying because I feel my symptoms will be a lot worse by then

        Comment


          #19
          Keep that if can't give anything else. It's not too bad. Could mum pick up post for few days so you and kids could go on holiday for few days?


          Comment


            #20
            Sarah92 Your never alone when you have us 👍🤗😘😍xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

            Comment


              #21
              Yes I plan on going home (Birmingham) for a few days my partner will be here to check post. I moved to Southend Essex two years ago, another hurdle if things don’t go as hope is living far from family x

              Comment


                #22
                Southend used to waxworks on a mock-tudor sort of ship "golden hind" near pier. Outside was sort of crowd-puller waxwork of bloke under eternally swinging blade. If you can get out for few days In Birmingham might take mind off things for a bit. As Matt says we all hope goes well. x

                Comment


                  #23
                  Very interesting! it’s lovely down here. Yes hopefully a few days peace. Thankyou both I will update when I know more x

                  Comment


                    #24
                    Originally posted by Sarah92 View Post
                    I’ve called the helpline and they are great with listening and reassurance.
                    I’m sorry that the reassurance you had from MNDConnect didn’t last and that your anxiety is affecting you so much, which must also be affecting your children - not ideal in anyone’s book. Maybe you should ring the MND Connect Helpline again and have a real-time conversation with a real-live person to help reduce your anxiety levels - you’re not doing yourself or your children any favours by trawling the internet to read about MNDs, which I'm sure you know...

                    Nobody is symmetrical, everybody has muscles unequal to their counterpart on the other limb/side, self-evaluation of atrophy is very difficult; ALS atrophy happens *after* significant loss of motor neurons, which is as a result of loss of function.

                    Your neurology appointment will come around soon enough - it’s summer, enjoy the school holidays with the children, don’t waste any more time feeling your muscles and looking at your tongue! Have fun times.

                    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


                      #25
                      Hi Sarah

                      I think we've spoken a few times on the phone over the last few weeks. I'm sorry that you still have concerns. Having had several conversations with you, your speech sounds normal and there has been no obvious change in it since I originally spoke to you a few weeks ago and when I spoke to you a couple of days ago.

                      As Ellie has explained and as we've discussed over the phone, atrophy is something that happens later. It isn't an initial symptom of MND. By the time atrophy can be physically seen, the area with the atrophy would be significantly affected. As we discussed, if your tongue was atrophied then your speech would be very poor and it isn't.

                      Please do give us a call again if you want to discuss it further. You aren't going to find any answers or reassurance on the internet. We're always happy to discuss people's concerns and sometimes it just helps to talk these things through.

                      We're available on 0808 802 6262 Monday-Friday 9am-5pm.

                      Best Wishes

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

                      Comment


                        #26
                        Hi. If you feel that your symptoms change faster, talk with your GP. They can contact the neurology team and try make everything faster when possible.
                        I did that and the GP help me a lot.
                        My symptoms start slowly on first week last April.
                        Blood test, special blood test, MRI scan, nerve conduction and EMG, video RX swallow tests (may/June).
                        My diagnostic was give me at 29th June 21.
                        I'm a mother of 3 boys too . Our brain can be tricky but you can try thinking positive for them and spend quality time with them 😊.
                        My Deterioration it's been so fast than my family it's now in shock but I try hard to not scare my 2 youngest.
                        We all die one day. We with MND just knowed in advance. But the true, we can die when cross the road any moment.
                        So, enjoy as how much you can with your love one's and fingers cross your diagnosis come with different problem so you can rest your mind and heart ♥️

                        29/06/21 bulbar onset MND /ALS
                        ​​

                        Comment


                          #27
                          Hiya thanks for the responses they really do help. I’m staying in Birmingham with friends and family trying to stay positive. I know you all here can’t help other than kind reassuring words which I am very grateful for. I just feel stuck in limbo, I have noticeable muscle wastage on my left leg and the left of my nose has a huge dip in it. I have pain all over my body, I have fatigue which is so difficult with young children to look after. I’m finding it more difficult to swallow everyday. I’m sorry to post here again but I don’t know where else to go to voice how I feel. My partner is threatening to leave me as he thinks I’m crazy, I feel like I’m just waiting to lose ability to walk or my speech really gets affected so people take me seriously

                          Comment


                            #28
                            Hi Sarah, sounds like you and your partner need some relationship counselling. I hope that things between you improve because you have enough to deal with already. 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


                              #29
                              Hi Sarah92 the neurologist will take you seriously and that's what matters.x

                              Comment


                                #30
                                Hiya the neurology department have called and they have a cancellation for Friday which is great, I thought I’d feel relief having not to wait longer however I’m extremely nervous and worried, I don’t have anyone to come with me and I fear I’ll be an anxious wreck during the appointment. I’m just wondering is there anything I should prepare for or say to the neurologist? Thanks again for all your support 🙂

                                Comment

                                Working...
                                X