Announcement

Collapse
No announcement yet.

New website for PMA sufferers

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

  • Deb
    replied
    Hello Arakysa,

    Please don't say sorry. We all want to help each other on the forum and you're not bothering anyone. However, we're not doctors or experts and progression in MND does vary. My symptoms were symmetrical but others will have a different journey.

    Take care,
    Live Debbie x

    Leave a comment:


  • araksyaboyajyan
    replied
    Deb you know whay I'm asking that questions, doc don't know exactly what disease I have, pma, flail legs sindrom or something else, that's why in May 2021 doc Bedouin take my splint for test some genetic disease, my simptoms begins two legs together very simmetricaly ,proximaly, pma and flail legs syndrome don't begin proximali, flail arm can begin proximaly(difficulty go up stairs,lower chair,) sorry I'm bothering you,

    Leave a comment:


  • araksyaboyajyan
    replied
    Thak you Deb, my two legs have the same weakneses, first I couldn't jump with two legs equally, then in June 2014 I noticed that I couldn't run, then my walking became not good, in December 2014. I have first foot drop, then in April 2015 second foot drop. In 2014 I wolked, my legs have full movement but I have thighs atrophy in two legs equally. Deb you have foot drop, ?and your weaknesess begins befor foot drop or after, sorry for my questions and again thank you for answering me

    Leave a comment:


  • Deb
    replied
    Hi Araksya,

    Yes my symptoms began in both legs although initially I think one was weaker than the other. I have muscle atrophy because I have no movement in my legs. However, although my arms are getting weaker the progression is considered slow.

    As part of the MND community I feel fortunate and I have good support which helps.

    I wish you well and hope you take care,
    Love Debbie x

    Leave a comment:


  • araksyaboyajyan
    replied
    Deb you remember how begins your simptoms , two legs together or no, and atrophy, you have thigh atrophy

    Leave a comment:


  • Deb
    replied
    I'm so sorry that you have such alot to cope with, Araksya. It must be very hard for you and I wish I could help.

    Im not sure if you have help from health professionals but they would be good people to talk with.

    Love Debbie x

    Leave a comment:


  • araksyaboyajyan
    replied
    Deb this is again Araksya, you very positiv , I want to be your friend , iam 64 years woman, have 40 years old son, and two granddaughters 8 and 5. I have husband but he is not friend, he is very complicated man, and after 39 years together living he want other wife, he drink , and after I became disabled he said I don't want die with you, I know there are different humans, I and he very different, he always cheated on me, but I liked my son very much and lived with his dad for family. Last year he want to bring the woman our home to live with her, even I don't dye yet.my son didn't allow lim did that, but for me doesn't matter olredy. I want get little better and go live separately, why I writing this to you I don't know , I am very depressed and I think you will understand me, thank you

    Leave a comment:


  • araksyaboyajyan
    replied
    Deb hi, thak you for answering me, l was wondering yor simptoms begins simmetricaly in both legs, weaknesses and thigh atrophy in my case begins together and very simmetricaly .in 2018 After 5 years my simptoms onset my diagnosis changed from als to pma then flail legs sindrom, l have only legs simptoms , no twitching no cramps.

    Leave a comment:


  • Deb
    replied
    Hi Arakysa,

    Sorry to not get back to you. Although it might not seem like it you are doing well to be on your feet with a walker 8 years after diagnosis.i hope that continues for you.

    Im not an expert on PMA and I tend to take one stage at a time. I use a powerchair full time and am unable to weightbear so I need help with transfers. However my swallowing and breathing are OK so I feel fortunate. I know PMA is likely to become ALS and some doctors believe it is a slower developing form. Mine began with leg weakness 6 years ago.

    Its great you can still do cooking, cleaning and laundry. I never thought I'd miss doing those !

    Take Care of yourself,
    Love Debbie x

    Leave a comment:


  • matthew55
    replied
    Sadly Barry is no longer with us.☹️

    Leave a comment:


  • araksyaboyajyan
    replied
    Hello Deb, this is araksya , you didn't read my post?

    Leave a comment:


  • Ellie
    replied
    araksyaboyajyan Did you look at the website this thread talked about?? They have a live chat on Monday.

    Leave a comment:


  • araksyaboyajyan
    replied
    Hi deb,Deb, thak you Haney, how and when begins your simptoms, my simptoms begin late in 2013 , I noticed that I couldn't jump with two legs equally, then in 2014 I couldn't run, then my walking became not good.in November 2014 I have first foot drop, in 2015 April second for drop. 2015 June in usc doctor did emg there was diagnosis polyradiculoneuropathy or motor neuron disease. 2015 October in kaiser neurologist give diagnosis als, in 2016 outside I walked with can, in 2018 I walked wit walker, but still on I have only lower motor neuron sign, only in legs , in 2018 April in usc als research center doctor Bedouin did all testes and said no als. And I October 2018 in kaiser als center doctor said pma. I was wondering Deb your simptoms begin simmetricaly and I have olso thighs musculs atrophy begins simmetricaly olso.i know that upper motor neuron sign can emerge any time and pma will turn to als. I stillwalking with walker and doing all household things lining on walker cooking , laundry, cleaning

    Leave a comment:


  • araksyaboyajyan
    replied
    Ellie thank you for answering me ,you very kind, how many years you have simptoms, I have olmost 8 years, only lower motor neuron sign only in legs, but iknow that upermotor sign can emerge any time even after 10, 13 years and my pma will became to als, sorry for my question but ellie you know somebody withpma diagnoses. Again very thankful for answering me.

    Leave a comment:


  • Deb
    replied
    Hi Araksyaboyajan..l I'm so sorry you feel you have noone to talk to.

    As you have probably seen from my earlier post it is suspected i have the PMA variant of MND.i haven't had an EMG for three years and on the last one there was no evidence of upper motor neurone damage. However I was told this could change and I could have a slow developing ALS.. I am no expert at all but I opted to treat my symptoms as they occur rather than have repeated tests.... we are all different but thats what we chose.

    I am happy to chat with you about how this affects me either on the forum or by PM.
    Take Care,
    Love Debbie x

    Leave a comment:

Working...
X