Big thanks to MND Connect

[Arcadian]

Just a thank you to the folk on the MNDA Connect helpline...

A couple of structured and empathetic conversations on the phone clarifying how to communicate with a Doctors Practice and Hospital interfaces during further symptoms progression, as well as a couple of printed booklets in the post too for family and friends associated with me.

After a 'good start' (in the circumstances) with my GP and Hospital and my own initially proactive outlook, some gaps and timing issues along the diagnostic journey the last few months (access to GP appointments and which hospital / health region has overview).
The Helpline People gave some very important pointers and focus towards communication, expectations and additional resource support if required.

This massively underlines the importance of such specialist organisations and the work they do in supporting folk. (I already have some unrelated complex incurable / quality of life medical needs from over the last 15 years, as well as 'not looking ill' sometimes being a barrier in initial medical scenarios and what you become conditioned to tolerate without external guidance).

[MNDConnect]

Dear Arcadian,

Thank you so much for your very kind message. The MND Connect Team really appreciate it.

It is good to know that we have been a support to you along the way.

Again, thank you.

Kind regards
MND Connect

[Arcadian]

Thanks once again for recent empathetic and focussed guidance on engaging with medical professionals regarding symptoms and priorities, as well as support overall.

[Zed]

I am really happy for you.

I totally get your point about not looking ill. I met the private consultant earlier this week who is an MND specialist. I am still at diagnosis stage but because I look well, and trust me I'm not, was told that it's not MND, until I insisted on getting my breathing checked. This is let alone with body wide twitching and some pain strange stiffness in toes and fingers. As of now, I cannot sleep and struggle to breath on a daily basis. Constantly dosed up on an inhaler. I've been AE three times already Aug, Sept and Dec and all they do is check O2 Sat, and send you home. During the last visit I was given three doses of nebuliser. I dont even know what to do....

[Arcadian]

Zed Hope you get some clarity for your situation.
My comment above is after using the MNDA Connect helpline in relation to clinic appointments and some of the other MNDA info resources.

If wider medical history complicates or adds ambiguity to symptoms, I use the Connect phone number before or after medical appointments, to help focus and guide priorities, or to separate out more general health issues that can be dealt with locally.
This also helps minimise anxiety and uncertainty.

[Zed]

I've called them a few times too, under great distress. They listen a lot more than others. It's a great resource which needs much credit.

[Ellie]

I am still at diagnosis stage but because I look well, and trust me I'm not, was told that it's not MND

That's a rather disingenuous comment: you were told that you do not have an MND after a normal clinical exam and a normal EMG test.

[Zed]

I don't want to sound ungrateful, rude or disingenuous - sorry if it came across that way. There are a few of us on here who are getting normal EMGs but have symptoms. Symptoms which may not be related to muscle groups connected to EMG studies. Sorry if I offended you or anyone else.

[Arcadian]

It's an unfair situation to chase incremental diagnostic features from others, due to the varied (heterogeneous) nature of MND and a symptoms overlap with a lot of other conditions.

For example:-

My extensive all over EMG tests "Unequivocally support a diagnosis of limb onset ALS".

In a recent report to my GP "His remarkably mild physical / visual symptoms belie the significant EMG results in all regions of his body."

It's some of the other physical symptoms and sensations that were (are) ambiguous (but I also have other longterm manageable inflammatory autoimmune illnesses that cloud that).

I volunteer as a diagnostic studies participant, particularly regarding MND early signs - obviously I don't get any diagnostic feedback for all sorts of ethical reasons, but it arguably potentially will help folk going through differential diagnosis in 5+ years time if significant research progress is made around clearer earlier signs.
(Although potentially telling someone a lot earlier poses other ethical, psychological and philosophical risks, in the absence of a cure).

I do empathise with anybody going through a protracted ambiguous pathway with neurological concerns - I had over 12 months of it and a misdiagnosis for something simpler and nearly had unnecessary limb surgery, until MND became a concern.

For anybody struggling with the drawn out process of neurological issues - do contact organisations like MND Connect for guidance and reassurance.
If unsure regarding your local Doctor etc. consider another medical professional like a neuro experienced Physiotherapist, who can write to your Doctor withbtheir observations in appropriate medical terms.