Should I be concerned and how to get doctor to pay attention

[Cat-Pigeon]

Hi everyone,

I am 47 and my dad passed away from MND with FTD 2 years ago yesterday. It was approx 6 months from diagnosis till he died. Sorry not sure if that is relevant. As well as everything else I have of course been concerned about the potential of it being passed on. Me and my sister both agreed we weren’t going to go down the route of genetic testing. I have a lot of pain issues because I have totally non related things in my family but lately I have started to worry about achy muscles when I don’t exercise and also my Physio said I had some muscle weakness in my legs. The thing that got me worried though was the last probably 6 days I’ve had that on/ off feeling of a lump in my throat. Don’t know where to go from here and what to ask from my gp who is fairly dismissive in general and will probably just fob me off. Or does it sound like I’m getting ahead of myself worrying? I am that type of person unfortunately! Any advice would be welcome. Especially if it says I’m being silly and not to worry! I have been stressed over some stuff and I read that can cause you to feel like you have a lump in your throat. Maybe I’m jumping the gun. Sorry to ramble.

[JamesW]

Hi,

Sorry to hear about your dad 😔

Can I ask if anybody else in your family has or has had MND or FTD? The reason is because familial (or inherited MND) is passed from parent to child as a genetic defect. In most cases there will be a clear family history of MND in the families that are affected and as such a case your neurologist would refer you for genetic testing. MND is very rare and familial cases make up only 10% of that total.

If you are concerned about your own symptoms you should definitely talk to your GP as there are many things that can cause the symptoms you describe. If necessary your GP can refer you to a neurologist.

Take care, James.

[Cat-Pigeon]

Thank you James ☺️ On my Dad’s side his Mum didn’t have it but I always think his Dad died fairly young from lung issues from being a miner but who’s to say he wouldn’t have potentially had it? The consultant (that we barely spoke to) said this was actually quite late on set for my dad having this. I don’t think his grandparents had it, I don’t know much about them if I’m honest.

[MNDConnect]

Hello

I am sorry that your dad passed away with MND/ FTD and that you now have concerns about MND being passed on to you.

Only a small proportion of people living with MND have inherited the disease (about 10%) this is known as familial and even people who inherit a mutated gene do not necessarily go on to develop MND.

People with inherited MND usually have a clear family history of the disease and with more than one close blood relative being affected; for example, parents, brothers, sisters, aunts, uncles or grandparents.

We would always suggest you should contact your GP to discuss concerns about symptoms, but please remember that MND is still a very rare disease and number of things could be causing your medical symptoms.

Try to not worry about your symptoms, as anxiety can make a lot of things worse and actually cause physical symptoms to occur.

You can also contact Anxiety UK on 03444 775 774 if you feel that your getting stressed over this issue.

Please take care of yourself and contact us at MND Connect on 0808 802 6262 or by emailing [email protected] if you wish to discuss things further.