Questions for a Neurologist follow-up?

[Arcadian]

I have a Neurologist appointment this coming week, first follow-up (excluding a second opinion) since my interim 'limb onset ALS' diagnosis in March, 20 weeks ago (after EMG tests).
No additional exclusion tests for other illnesses have been scheduled since March.

What are a few sensible questions to ask?

Changes since March are:-
Bilateral tricep muscle atrophy
Neck ache / discomfort
One or two random choking events
Disturbed sleep
Occasional sleep blood oxygen saturation drops to 85 - 90%
Thigh (aductor)? 'hollow' sensation, similar to how my arms started last year.
Increased foot drop (stumbling / scuffed toes on boots)
Fatigue / apathy

[Ellie]

... Bilateral tricep muscle atrophy
Neck ache / discomfort
One or two random choking events
Disturbed sleep
Occasional sleep blood oxygen saturation drops to 85 - 90%
Thigh (aductor)? 'hollow' sensation, similar to how my arms started last year.
Increased foot drop (stumbling / scuffed toes on boots)
Fatigue / apathy

If your appointment is in a multidisciplinary MND clinic, you should also see as many of these as possible to discuss the above list: OT, Physiotherapist, SLT, Dietitian and maybe a Neuropsychologist. The Physio can often do a preliminary respiratory assessment but you also need, at the very least, an overnight pulse oximetry test at home, and preferably full pulmonary function testing as you've not had any done.

If you only see the Neurologist, you need to be referred to the various HCPs I have mentioned - the upside of attending an MDT Clinic is you can see almost everyone at an appointment, the downside is that it can be a long, long day... (Not all clinics will have all disciplines)

Hope it goes well for you. xx

[Ellie]

No additional exclusion tests for other illnesses have been scheduled since March.

What are a few sensible questions to ask?

You could ask if now that 4-5 months have passed since you were given an interim diagnosis of ALS and having seen you today, has that opinion changed up or down in any way and, if so, why?

Bring a notebook! xx

[Arcadian]

Yes, will be seeking clarification of diagnostic status (criteria level) as a priority.

Respiratory function (vital capacity) used to occasionally raise some questions in the past regarding spirometry tests as part of my previous work (8 years ago). I've already expressed disappointment to my GP that simple baseline testing wasn't performed months ago for respiratory function and limb strength (so that measurable comparisons can be made over time).
Recent physio assessments have been by my own arrangement / private - although fed back to the GP regarding reflex, atrophy and strength changes.

I'm trying to be 'open minded' regarding additional resources at this appointment, but this is a consultant's day clinic at my local hospital as a satellite to a major neurological hospital only 20 miles away.
At present I'd rather go to the neurolgy hospital with its additional resources...
(Local hospital was recently rated about 112 out 116 in England and other unrelated serious illness personal experiences and admin aspects don't inspire me).

The important thing for me is:-
Clarification
Progression of symptoms / rate of progression
Issues related to other existing serious / incurable illness
Resources available
Guidance on what symptom changes necessitate communication with a medical professional (and who / where).

It's how to focus likely concerns in a way to the Consultant and any delegated professionals?

[Ellie]

It's how to focus likely concerns in a way to the Consultant and any delegated professionals?

You have succinctly listed the changes you’ve noted - agree that lack of baseline testing is a glaring omission - so you could use those to agree a who and what plan going forward, both community and hospital based. Following this appointment, you can decide if you feel it would be better to travel further to a hospital which would better suit your needs, particularly given your comorbidities.

Relevant disciplines for your list of current symptoms:

Bilateral tricep muscle - Physiotherapist assessment
Neck ache / discomfort - Physiotherapist/OT assessment
One or two random choking events - SLT assessment
Disturbed sleep - Respiratory or (initially) Physiotherapist assessment
Occasional sleep blood oxygen saturation drops to 85 - 90% - Respiratory or (initially) Physiotherapist assessment
Thigh (aductor)? 'hollow' sensation, similar to how my arms started last year. - Physiotherapist assessment
Increased foot drop (stumbling / scuffed toes on boots) - Physiotherapist/OT assessment for referral to Orthotics
Fatigue / apathy - Dietitian, Neuropsychology and Respiratory could all have input here

[Arcadian]

The appointment went a lot more positively than expected...

Professional, practical but empathetic dialogue. 'Interim diagnosis of limb onset ALS' is now 'a working diagnosis' based on Neurophysiologist interpretations of the EMG tests in March being consistant with cases of MND, as well as Consultant's physical symptoms assessment. Symptoms progression at present is reassuringly slight for now.

Some slight ambiguities around mimics. Various background issues and history discussed subject to relevance.

Logistics around ongoing care and review via my local hospital was discussed, but I've indicated a preference for attending a large neurological hospital 25 miles away in a different NHS area, which the Consultant supported and transferred (as it has an MND Clinic, MND Nurse, MDT, etc.)
Various symptoms concerns will be assessed as appropriate by team professionals.
Pencilled in for research patient assessment projects too.

[shelly21]

Well it sounds positive in regards to being a slow variety. Well done you for arranging to be seen at a better hospital.

How are you feeling now?

[Arcadian]

shelly21 Better than I was, there was a hint of being in an administrative no-mans-land since March until now, with no support or guidance. Outcome today was better than expected, as I'd been referred for exclusion tests by GP at the start of 2022 with clear risk of serious neurological illness, after a previous year of uncertainty.
At least now things are with a structured team of specialised professionals.

[shelly21]

Arcadian yes that must have been frustrating. No man's land is just mind destroying.

So hopefully you will soon see an OT, physio etc. Maybe try to get orthotic appointment re foot drop. Range of movement excercises for my atrophied limbs have worked. Found some good ones on YouTube.

What was discussed re mimics? Did you ask them re other possibilities?

[Ellie]

The appointment went a lot more positively than expected...

Oh that's great to hear Arcadian And you're definitely better off attending an MDT, even if an appointment takes a chunk out of a day.

some slight ambiguities around mimics.

Perhaps the MND Neurologist might be better suited to address that with you? xx

[Arcadian]

...Perhaps the MND Neurologist might be better suited to address that with you? xx

Yes, the Neurologist today visits my local hospital as a satellite clinic, but suggested mimics could not completely be ruled out, but only an optimistic avenue, compared to the interpretation from the EMG profile.

After 18+ months of medical ambiguity and uncertainty impact, just relieved that appropriate focused guidance and resources are now potentially available and coordinated from an MND clinic at a Neurology hospital.