My symptoms

[Josh93]

Hi,

Hoping someone could help. I’m experiencing constant widespread body fasciculations, head to toe including eyelids. They are becoming more frequent and are very intense in my calves and feet. I’ve had these symptoms for 8 months, but no weakness. I’ve had 3 emgs, all came back normal alongside several normal clinical examinations. I’ve seen 3 neurologists, all have diagnosed me with benign fasciculations. My grandad died from mnd at the age of 75, so I am very concerned this is mnd and I have a very aggressive form starting all over.

[Coxl3]

I thought this forum was for people only
diagnosed ?

[Ellie]

Hello Coxl3 and Welcome to the Forum.

As a new member, you may not be aware of the Forum Guidelines, which can be found by clicking its tab on the end of the page, the first of which is:

"Forum Guidelines

This forum is an online community for people living with or affected by MND to share experiences and support one another. It is also a safe place where people who are experiencing symptoms or awaiting diagnosis can ask questions and express their concerns."

Occasionally people post and seek help, especially on this MND Connect sub-forum.

Take care.

Love Ellie.

[Banned]

Please ask/demand of your lead consultant, a gene test Joshua. I understand your fears and they must be acted on. The gene test will reveal your susceptibility to MND, particularly if there is family history.

Please don't be intimidated by other users. You have an automatic right to this forum as a past carer in any event.

[Jer788]

Good luck Josh, let’s hope it’s something minor and unrelated 👍

[MNDConnect]

Hi all

I apologise for the delay in our response. Just to clarify, everyone is welcome to use the forum whether they have MND, know someone with MND or are concerned that they may have MND. We don't restrict who can use the forum.

Josh I am sorry to hear about your concerns. Fasiculations without clinical weakness would not suggest MND and it sounds as though you've been diagnosed with Benign Fasiculation Syndrome. This would explain the wide-spread fasiculations that you are experiencing.

I am sorry that your grandad died from MND. It's natural to worry about MND when you've experienced the loss of a loved one to the disease. Three neurologists have confirmed that you do not have MND and you've had tests and clinical examinations which have confirmed this. I know that it is very difficult but you need to listen to these neurologists as they are the experts. None of the information that you have given would suggest that you have MND.

Best Wishes

Rachel
MND Connect Adviser