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Hi everyone, from a recently diagnosed 29 year old female!

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    Hi everyone, from a recently diagnosed 29 year old female!

    My name is Gemma and I was recently diagnosed with MND on the 10 June 2016. I am only 29 years old.

    I started to notice my speech was slurred, sounded quite nasal and that I was having to think more to get words to come out of my mouth when speaking. This was about eight months ago. I went to the GP and she referred me to a speech therapist. I then noticed earlier this year that I was finding it hard to run (I was a keen runner and gym goer up until autumn last year) and now find it difficult to walk at times because my legs stiffen up, especially on the right side. I have good days and bad days with my speech and walking. I've had one trip on concrete so far (and hopefully no more!) that resulted in a badly bruised chin and sore, cut knees. After a holiday in March this year I went back to my GP who referred me for a CT scan (came back clear), bloods (all came back normal) and then EMG tests, with a referral to a neurologist at Addenbrooke's. I know the EMG test raised a few concerns with the neurologist and I have seen three different consultants now and all diagnosed it as MND. I have had my final test, an MRI today and my consultant said he expects that to come back normal.

    I also suffer from emotional labiality and get tired easily. Just these past two weeks I have been waking up in the night because the side I sleep on goes a bit numb, so I have to turn.

    It's so strange. Up until last year I was so fit and healthy and active. I knew when things started I didn't feel right in myself. I am starting my voice banking this week (had email confirmation a few days ago that my voice is good for recording).

    Going to give Riluzole a go.

    Any advice that you may have regarding the early stage of MND would be greatly appreciated. It's all very overwhelming, especially for me to have been diagnosed at such a young age. I've already started with my fundraising and awareness raising

    #2
    Hi GemmaPob,

    I'm so sorry that you find yourself here but it's a good place to be for support. We are all at different stages of this grotty journey and it seems to affect all of us in different ways and at different times. Members here are very knowledgeable and I know you will be encouraged to share your ups and downs with us. There is help out there for when you need it and there is always someone here who will tell you how to source it. Don't be afraid to ask. The early days are tough and there is a lot to get your head round but what ever you may be feeling you can be assured that it is perfectly normal and we've been there.

    Be kind to yourself and accept forum hugs when you need them.

    Comment


      #3
      Sorry to welcome you aboard Gemma.

      Some people find antidepressants good for emotional lability. Ask your OT about mattress solutions; you definitely don't want a pressure sore!!

      Have you support at home?

      Love Ellie.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
      Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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        #4
        Welcome Gemma

        Sorry for your diagnosis. You have found the right place for great advice, support, and knowledge. Wishing you all the best.

        CCxx

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          #5
          Hi Gemma
          Welcome to the forum, sorry you have to be here, but everyone is nice and there is lots of help and support available
          Wendy x

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            #6
            Hi Gemma, so sorry to welcome you here xxx

            Comment


              #7
              Hello Gemma
              So sorry to find you here, at such a very young age.
              What type do you have?
              We are all friends together here, ask anything.
              Mags xx

              Comment


                #8
                Hi Gemma,
                Sorry to hear about your situation. Mnd is supposed to strike people between 50 and 70 and is more common in men than women so you are very unfortunate to become a sufferer. It does seem quite often to strike fit people and there are theories why this should be. You will no doubt be aware that treatment options are limited to Riluzole at present but there are things on test and with luck one or more of them will prove effective.
                If you want to self experiment there is a site called alstdi forum which is USA based and the members are people looking for answers. If you look at the proletariate protocol thread there is lots of information about things you can try which may impact on your condition. Everyone seems to have a different disease although they all have the same name so you need to experiment to see if you can find a mix of vitamins and supplements which may benefit you. DaveJ is the guy who divised the protocol and will answer any questions you may have relating to the protocol.
                Welcome to the forum and again sorry you find yourself here.

                John

                Comment


                  #9
                  Hi Gemma and welcome.

                  You are indeed very young to get this diagnosis however youth is a strong point in coping with the symptoms of MND. Your description of the onset mirror mine and I was later told I have PLS which is a slower developing form of the disease.

                  Ellie's suggestion about antidepressants is good and I find they help me. I would consider very carefully taking riluzole as the benefits probably do not outweigh the side effects. Admittedly not everyone has side effects but this drug would normally be offered if you have a fast developing form of MND. I realise not everyone will agree with my view but I have witnessed several friends who experienced an adverse effect on their quality of life.

                  Best wishes
                  Barry
                  I’m going to do this even if it kills me!

                  Comment


                    #10
                    Hi

                    I have joined as my sister is 47 and she like you was keen runner and yoga fanatic and suddenly had similar symptoms,diagnosed last September.The hospital has advised she has two types and has a rare type called fosms .

                    I wish she would join the forum for support, but she can't deal with that.

                    Her speech is slurred and both arms she can hardly use.


                    Her next appointment is Thursday,where she will advise she doesn't wish to have a peg to help with food.

                    Any advice especially if anyone has been told they have fosm strain.

                    Comment


                      #11
                      Gemmapob sorry to hear someone so young has got this MND. It is one of those things you never know what is around the corner. I was 65 when formally diagnosed but kept my self fit by walking a lot and swimming twice a week. If still walking suggest walking frame with the wheels these handy early on. I now use zimmer in the house then wheelchair. My speech not good but did not bank it. I use Speak It of the Internet on my iPhone and iPad. You will get all the information for lots of things off this forum.
                      Hope everything ok
                      Jay Tee

                      Comment


                        #12
                        Hi Gemma and welcome to the forum,

                        A lot of good advice already. It does take a bit of time to get your head around a diagnosis like this.

                        Please feel free to ask any questions.

                        Best wishes Terry
                        TB once said that "The forum is still the best source for friendship and information."

                        It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                        Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                        Comment


                          #13
                          Hi Killygirl and welcome to the forum,

                          You will have to try and be a go between and ask questions on your sisters behalf.

                          Best wishes Terry
                          TB once said that "The forum is still the best source for friendship and information."

                          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                          Comment


                            #14
                            Wow, thank you everyone for all the replies so far.

                            I haven't actually been told what type I have yet but with the symptoms I am currently showing my consultant believes it's one of the slower progressing forms.

                            I have read a lot about the research that is going on and recent breakthroughs so we are getting ever closer to a cure. I have also read a lot about how many fit and active people develop the sporadic form of the disease. I've no preivious family history of MND or MS but both my grandparents had bad Alzhimer's.

                            Interesting to hear about Riluzole. I'd be keen to hear about other people's experiences with the drug One good thing I guess is that you can always stop taking it if the side effects start to affect your quality of life. I have just heard that it's more effective the earlier you take it?

                            Thank you for the advice on the adaptations I can make. I have my first visits from an OT and PT at the end of the month. They are coming to assess me in my own home.

                            Thanks again!

                            Comment


                              #15
                              Hi Gemma;

                              There has been quite a lot written about Riluzole on this sit, most of it positive.

                              He are a few links to some threads about it:-

                              http://forum.mndassociation.org/show...light=riluzole

                              http://forum.mndassociation.org/show...light=riluzole

                              http://forum.mndassociation.org/show...light=riluzole

                              Please feel free to ask aswell.

                              Love Terry
                              TB once said that "The forum is still the best source for friendship and information."

                              It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                              Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                              Comment

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