Announcement

Collapse
No announcement yet.

Newly diagnosed

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

    Newly diagnosed

    My husband has recently been diagnosed with PMA form of Motor Neurone Disease, has anyone else this form of the disease?

    #2
    Lelia Bratt A warm welcome to the forum Lelia.

    Yes, a few forum members have PMA and there are also partners of people with PMA who are members.

    Hopefully they'll be along soon.

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

    Comment


      #3
      Lelia Bratt welcome to the forum...look forward to reading your posts. Sorry can't help re PMA....xx
      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


        #4
        Welcome to the nicest bunch of people you will find anywhere. 😊😁🤗👍xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

        Comment


          #5
          Hello 👋
          Foxes Never Quit 💙

          Comment


            #6
            Welcome Lelia Bratt - not able to comment on PMA but wanted to say hello x
            Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

            Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

            Comment


              #7
              Lots of support and advice here, whenever you need it x

              Comment


                #8
                Hello Leila and hubby , welcome to the club
                if you have any questions please ask, someone will be able to help there is a good mix of carers and mnd warriors on here
                Is it specifically PMA you want to know about or just general what how why

                s.
                As long as there’s golf and beer I’m happy

                Comment


                  #9
                  Thank you for the above, overwhelmed with the amount of support available

                  Comment


                    #10
                    Hi Leila and a warm welcome to the forum from me. Im really sorry for your husband's diagnosis.

                    I have PMA but I'm not an expert so i can only chat about my own experiences. I was originally told I had ALS but after repeating the EMG and NCS there was no evidence of lower motor neurone involvement so the neurogist said it was the flail leg type of PMA. I was advised it could become ALS and if I wanted I could have regular EMGs to check.

                    Some folks might want this but I declined because I would have found the tests and waiting for results stressful. It is what it is. I was diagnosed 4 years ago. I can't move my legs at all and my arms are weakening albeit slowly. However,my swallow, speech and breathing are OK so in MND circles I know I am very fortunate.

                    Please do PM me if you want a chat.
                    Love Debbie x

                    Comment


                      #11
                      Originally posted by Deb View Post
                      I was originally told I had ALS but after repeating the EMG and NCS there was no evidence of lower motor neurone involvement so the neurogist said it was the flail leg type of PMA.
                      Just for clarification purposes (I'm not questioning what you said Debbie): PMA is a pure Lower Motor Neuron (LMN) disorder and differs from ALS in that ALS involves both upper and lower motor neurons.
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
                      .

                      Comment


                        #12
                        Lelia Bratt The MNDA have an info sheet on PMA which, if you have not already read, is available here xx
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
                        .

                        Comment


                          #13
                          Ellie E=Ellie;n77606]

                          Just for clarification purposes (I'm not questioning what you said Debbie): PMA is a pure Lower Motor Neuron (LMN) disorder and differs from ALS in that ALS involves both upper and lower motor neurons.
                          [/QUOTE]

                          You can question me whenever you like @ Ellie and it's good you do. I always get my lower and upper motor nerones mixed up. My EMG showed no evidence of upper motor neurone involvement ( I think !!) Xxx😘🤗🤗

                          Comment


                            #14
                            Deb Having no UMN involvement would tie in with the PMA diagnosis for sure xx
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
                            .

                            Comment


                              #15
                              Where is MND in all of this?
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                              Comment

                              Working...
                              X
                              😀
                              🥰
                              🤢
                              😎
                              😡
                              👍
                              👎