I am Eileen Ann and newly diagnosed aged 79yrs

[eileen ann]

Hi I am newly diagnosed after 3 yrs of investigations .The consultant has said my condition seems to be progressing slowly as only my lower limbs are compromised .The diagnosis came as a big shock and I am still in disbelieve .I am curious to know what symptoms I should expect and what timescale .

[Lynne K]

Hi Eileen Ann and welcome to our forums. It must have been a horrid shock for you and your loved ones. I hope that you have all the help and support that you will need. I’m sorry that none of us can say about prognosis as every person with MND is on a different journey although symptoms can be similar, their speed of decline and order of symptoms occurrence.

Have you had a team of relevant professionals assigned to you yet (OT; Physio; Speech Therapist and Wheelchair Services if appropriate)? We all help and support each other as best we can. You can ask questions and people will come back to you with possible answers or signposts to where you can find stuff. You can offload if you feel like and nobody will judge you. We all offload now and again. But mostly we are all positive and trying to live each day as it comes.

If you still have a clear speaking voice then you might want to consider voice banking when you are up to it. There’s been lots of posts about this subject. If you’d like to read some then put ‘voice banking’ into the search posts box and lots will come up. You may not feel like doing this now after your dreadful shock when receiving your diagnosis but you’ll know where to find information later on.

Are you on your own and how are you coping with the lockdown and sheilding? Love Lynne x

[Ellie]

Welcome to the Forum, Eileen Ann and sorry to hear of your diagnosis.

It's hard to say what symptoms you'll have as we are all so different, especially as your progression is so slow - do you know which type of MND you have? - but do try and keep as healthy as possibe.

Lynne has given you good advice above.

Take care.

Love Ellie.

[Deb]

Hello Eileen Ann and a warm welcome to the forum,

I am so sorry for your diagnosis, it must have been such a shock for you. When I was diagnosed I asked the consultant how quickly I would progress and she said it was impossible to predict because everyone with MND is different in terms of progression and symptoms . It's good your consultant said your progression is slow , although i know nothing is good when you're first diagnosed.

Take care of yourself. I hope that you are getting support from the professionals inspite of the lockdown.

Love Debbie x

[eileen ann]

Thankyou Lynne for your reply .I as yet have not had any support from the professionals only by telephone as I was diagnosed in march just as lockdown began .I am also caring for my husband with dementia and didn't want anyone coming in until things get better .we have just one daughter who lives 200miles ways and is also shielding with ms .though she is desperate to come and help.We are coping as well as we can with help from other relatives . I have not been told to do shielding but I have been .I have a phone consultation booked with the consultant next week as the meds he prescribed (Riluzole) comes to an end,so hopefully I will know more of what support is available then . But I just would like to hear of other people's experiences xxx

[matthew55]

Dear Eileen I have Bulbar onset and my voice is nearly gone but I don't let that upset me. The future is an undiscovered country where anything can happen? I just take it one day at a time, somedays one one hour at a time. Be strong and on here at least you are never alone. Love ! Matthew x

[eileen ann]

Hi Mathew listening o your story I count myself lucky as my symptoms seem mild compared to yours .I just have weakness in my legs and get exhausted very quickly .I was due to have more tests including a lumber puncture just as lockdown started so it was postponed .the consultant said the tests would eliminate other conditions ,but said I had lower mnd .xx