I’m so terrified

[Johnny5]

Every day that goes by without an official diagnosis is a day to celebrate.

[Ellie]

Helen212 Oliveroldc It is obvious that neither of you read the post which led to the sanction being imposed: believe me, the content of that post is the only "disgusting" aspect of this issue.

[Helen212]

No I didn’t

I rarely come on here anymore.

Graham was knowledgable, and straight down the line. I take as I find in life.

[denise]

Oh dear. I can't even private message him. 🙄

[Deb]

No I didn’t

I rarely come on here anymore.

Graham was knowledgable, and straight down the line. I take as I find in life.

I take as I find too, at least I hope I do. These days I am rarely offended as I've other things to concern me but his latest post shocked me and was deeply offensive. The forum needs to be a safe and supportive place to be for everyone.

[Christopher]

I love this forum as a place of love and understanding. Where we go to find strength from others and advice from our peers.

I would find it even more difficult to get through the days without this forum.

We can joke in a protected place.

It is Monday morning. My last face to face contact with a person was on Friday.

The community on here stop my tears. I certainly come here to smile. The last thing I want to be is offended (I am not a man who angers, as I used to say to people, "if you want an argument, go and have it with someone else".

You can see why I eat so much cake
Love and hugs

[Deborah Layton]

Hi Helen

My heart goes out to you and my thoughts are with youx

[Anne123]

Hii. I have read the whole thing here... and i wish that i had the progression of yours. I understand you are worried sick.. i do to.. i have 2 boys.. one 9 months and the other one 2.5.. my symptoms are getting worse by the days.. what started as a hmm my sun is getting heavy my shoulder doesnt like that almsot 3 months ago.. to dang i can not hold my son longer als 2 minutes before i really need to put him down bevause other wise i will drop him. I cannot work with my arms above my head anymore. My arms just give out.. and my back is killing me each day..my hands are still okay. Notice some muscle irritation buth not as my arms

the fasiculations are driving my crazy, sinterklaas a few days in my bad arms and not a little bitt noooo.. almost whole day and very intens. somtimes it is just like someone gives me a lot of shocks and it pops like crazy.!. My upper arms shaking when i try to stretch out socks ( example ,). When i try to clean something above my head ore whatever my upperarm and back will cramp so bad that i can never start.. playing with my son is not always possible anymore..and so i have more symptoms that worry me sick. The nice part is.. nobody takes me serieus because i am still young (31). Buth with my health history and medications i take most doctors do. I need to fight my way to get what is needed. Answers for my family and myself.

Buth try and stay positive. The day that goes by in tears wont come back.. mnd or not.. ( everyday in my mind i scream pls dont mnd.. buth if its mnd you cannot change it) nobody wants it and look at the people here. The deal with it and making the best out of it.. so much inspiration🥰 i hope you wil get some answers and that you can live youre life.. is there still any testing ore is it all done?

[Sunset1964]

Hello I come on the forum now and then, sorry I don't really understand your message, have you had any testing done?

[Anne123]

Sunset1964 .. yes i am still in the diagnosis process. I am from the netherlands and you dont find active forums like this. My english is not so good as u guys 🙈

I had a clean mri, only been tested for ck that was normal at that time. Is now month ago! . I had an EMG i will get the results in a week.

My arms are getting weaker since september. most my upper arms/shoulder.

[Helen212]

Hi Helen

My heart goes out to you and my thoughts are with youx

Thank you x

[Helen212]

Update

still under diagnosis and my thoughts with all.

my breathing is now affected especially at night which is very worrying.

Horrible time still no answers.

[Ellie]

As MNDConnect has not logged in for almost 4 weeks, you're probably better off phoning or emailing them if you want a reply.