Announcement

Collapse
No announcement yet.

Back after 8 months

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

    #16
    Shepster34 it might be worth self referring into your local counselling service. Being able to talk things through can help....supports taking the anti depressant...my view is they go hand in hand.
    I also think mindfulness can at least 'take you out of your head' as over thinking is draining. Try the Head Space app.
    Take care
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

    Comment


      #17
      NIV works
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

      Comment


        #18
        Shepster from where I am I wouldn't bother too much about the EMG tests (apart from the pain of them) Albert's had 3 and none of them showed a single thing wrong with him! So much so when he was last asked to have one done he declined the offer!

        You mention the flail arm to which I can't comment but he has Flail leg problem, for him its just simply that he has no control over his legs and they fall off the chair, bed or wheelchair, he doesn't have any sharp spasms or even any pain with it............I think this is perhaps another of those "Different for everyone" jobbys.

        Husband Albert diagnosed PMA Feb 21

        Comment


          #19
          Originally posted by LindaB View Post
          Shepster34 it might be worth self referring into your local counselling service. Being able to talk things through can help....supports taking the anti depressant...my view is they go hand in hand.
          I also think mindfulness can at least 'take you out of your head' as over thinking is draining. Try the Head Space app.
          Take care
          I've upped my sertraline for now. I takes a bit to kick in. I'm going to ring my gp on monday see if I can get an appointment. it just seems to be telephone appointments lately but better than nothing.

          we'll see what he says. I definitely need some kind of counselling. I have to accept what's happening to my body and get used to the idea that my arms are both going.

          I thought that I would have one arm go before the other but the left has now caught up and overtaken my right in weakness, so it feels like they are going as a unit.

          the only meds I'm currently on are sertraline and an acid reflux ppi to stop sertraline affecting my stomach. I take vitamin d and c and also magnesium zinc and coq10 but I've not seen any improvement so unsure what they are doing.

          Comment


            #20
            Originally posted by Suefromwakey View Post
            Shepster from where I am I wouldn't bother too much about the EMG tests (apart from the pain of them) Albert's had 3 and none of them showed a single thing wrong with him! So much so when he was last asked to have one done he declined the offer!

            hi Sue

            I'm wondering if I may be similar to Albert. I was convinced the last emg would should up but it didnt. My weakness is even more obvious now, it's in both arms equally. whether it shows up on the next emg or not it will be obvious to the neuro I have some form of muscular degenerative disease.

            they've never tested my left side, so for the next EMG I will ask to test both arms. I'm pretty sure it will show on one or the other. my left shoulder has actually overtaken my right for weakness. I also noticed just going for a walk, that my left arm feels like its pulling on my left shoulder now and causing an ache in that shoulder. I found it hurt less to put my arm out of my jacket sleeve and use my jacket as a makeshift sling to take the weight.

            i seem to have hit another step with this progression. I've read its linear but I think as another muscle struggles you get that step feeling
            Last edited by Shepster34; 14 November 2021, 03:33.

            Comment


              #21
              well I've been to watch my daughter play football and have had a deep shoulder ache all the time I was there. it's like the weight of my arm is dragging my arm down and affecting my shoulder joint. I wasnt using my shoulder or arm, it was just hanging there.

              does this pain normally happen quite early on in the progression. I can use my arm and shoulder and have full range of motion. it seems premature to be affecting my joints so early. although I have atrophy in my shoulders there is still some muscle. it wasnt doing this last week, I only started with weakness in my left shoulder recently so I'm surprised this is happening so quickly. they've literally gone off a cliff.

              Comment


                #22
                just done my monthly measurements of my muscles. unfortunately I've lost another .5cm from each bicep and .5cm from my forearms. I noticed my biceps were aching last week and did wonder if this was the start of losing the muscle. strange to see it disappear without any fascillations.

                Comment


                  #23
                  I can only say how terrible this disease is. Make the best memories while you can.
                  Copyright Graham

                  Comment


                    #24
                    Shepster34 Just read through all this thread. I take sertraline and have been on it for several years. Had to change from my previous anti-depressant, escitalopram (?) as started to give side effects after a year or 2. All of these drugs take time to work, usually at least 3 weeks, but can be longer. I have suffered from depression since I was 8, and have taken pills, on and off, since i turned 20 something (can't recall). Finally, after my last (and worst) period, decided to stay on them forever. Now, i feel normal all of the time; being diagnosed with MND has made no difference to my moods. I can only trust that you will find something that works for you, sooner, rather than later. Just like with MND, there are lots of possibilities.
                    Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

                    Comment

                    Working...
                    X