Announcement

**TinyLady** · 1 December 2022, 15:20

It's really good that you are able to get involved with research. I hope the day hasn't been too tiring?

**Arcadian** · 1 December 2022, 15:39

TinyLady I was a bit infuriated by unnecessary delays and ambiguities in the conventional MND diagnostic process for myself in my locality and as a patient, until I got referred to a MDT MND Clinic (and as others have mentioned in the forum for their circumstances).

I got involved with both 'quality of life' research studies and novel diagnostic measuring techniques looking for biomarkers or progression rate at the earliest opportunity, once my 'conventional' diagnostic pathway looked certain.

**TinyLady** · 1 December 2022, 17:23

I had really hoped to get involved with research and general studies too. But sadly my diagnostic pathway has been vague at best. So I am on some weird borderline diagnosis. It's hurtful because I think it is not based on my symptoms but on protecting egos... I hope you find it a positive experience

**Arcadian** · 1 December 2022, 18:00

TinyLady I totally empathise - I had an 'interim diagnosis' of limb onset ALS after EMG in March (after some frank probability chats between the previous November and March with Doctors, but waiting months for neck / spine MRI to exclude anything else).
Diagnosis confirmed end of August, but March EMG results when I accessed my medical records shows correspondence between consultants / GP using phrases "unequivocally supports MND diagnosis".
Fuming! This wasn't to my awareness until 6 months later.
I'm now in a multi-discipline clinic outside my local health authority and tgey are reasonably pro-active and very engaging.

I've thrown myself into novel research whilst 'progression stages' have value, as I feel so strongly that folk should not have prolonged ambiguous diagnostic pathways due to lack of resources, technique, or just simply 'one exclusionary test after another' rather than an overall consideration of risk.

Some may argue "Live your life until formally diagnosed" but when you already have weakening limbs and are putting things on hold on major financial / work / personal decisions for 6+ months, I feel that view is over simplistic and unreasonable. Particularly where things could be positively focussed around proactively maintaining quality of life and mental health.

I also feel that earlier diagnosis that is catagorised as 'potentially significant' may be a way in for at least some form of futilure moderating medication (if things are too far gone regarding cell failure for a 'future' cure).

I'm just happy for researchers to use my brain for live subject testing, as well as other woolier (but valuable studies) studies around how you feel about the diagnostic and care process.

**TinyLady** · 1 December 2022, 18:28

Arcadian - I totally agree, the diagnostic process is currently varied and seems to depend on many factors that shouldn't be a consideration.

My diagnosis was initially delayed as I was diagnosed by a private neurologist with FND. I walked into the room and she stated she knew what was wrong, did a quick (fully clothed examination) and then declared I had Functional Neurological Disorder (FND).

After some months I realised it was seemed incorrect. So I ended up referred to Oxford MND centre who said they couldn't rule out MND, but as I had been diagnosed with FND then to go with that!

So I went privately to the world expert on FND because I was struggling with symptoms that just didn't fit. He unequivocally ruled FND out and was horrified. Sent me back to Oxford and told them he strongly suspected MND. But they are still (a year later) keeping me borderline (although it was confirmed January but they seem to have forgotten that), refused riluzole, a peg etc and claiming I have normal life expectancy.

In that year I've gone from walking, canoeing, swimming, dancing and mild left leg weakness to 3 almost useless limbs, poor swallow and speech and now my breathing is getting weak. But I've been told not to come back for a year. I'm not sure I will be here in a year. I distrust them and I'm confused.

So ANYTHING that helps a faster, accurate and unequivocal diagnosis would be a massive step forward in my opinion. Because I am not being treated well and I dread to think of others that are in my situation.

**Arcadian** · 1 December 2022, 18:33

I was misdiagnosed as local ulnal nerve compression and 5 days off corrective surgery, when my other arm rapidly atrophied (despite mentioning at my Doctor’s for 11 months previosly with bilateral 'weird' arm sensations and increasing weakness and fatigue) - another 4 months to be taken seriously, so 12+ months of neuromuscular symptoms before wider considerations.

**Arcadian** · 16 February 2023, 19:08

Back to research rather than my convoluted diagnostic journey - round 2 of the longitudinal TMS study booked for 2 weeks time and a cheap social overnight ovelap along the journey route.

Once again impressed by the empathetic, enthusiastic medical researchers and their Professors looking at these things.

I'm also through initial screening for a Positron Emission Tomography longitudinal ALS study in the very near future too.
I found that via a footnote on the NHS App regarding medical research.

weblink is as follows:-
(Search through neurology, mnd, als if interested).

Be Part of Research

https://bepartofresearch.nihr.ac.uk/