Admission to private hospital

Over the weekend felt I was losing ground, and totally losing the grip on being able to look after myself. Very little I could do for myself safely, and had lost the ability to safely drive as muscles, coordination, cognition, abdominal alertness had hit rock bottom. The exhaustion has been beyond belief.

Trying to get assistance via the public hospital where I attend the MS Clinic was not on in any realistic sense. There is nobody on the neuro team except for the excellent professor himself, his handful of registrars, and one nurse left to go around 100s of patients. There’s no dedicated neuro physio or associated back-ups, the hospital is grossly under-resourced. any attempt to contact nurse has resulted in being redirected to GP, though the professor has wanted me to be seen by the Nurse “Team” to explain aspects of MS, treatments available, symptoms control etc, he has been frustrated by posts in his department not being re-filled such that patients are being let down by the system.

One Dublin private hospital general consultant let me down last year deplorably and had thrown me back to the GP whilst refusing to share records with the him and subsequently to the public MS professor upon his repeated requests. I did obtain my own records by Freedom of Information request and sent them to my GP & the MS professor, although the best I could send were the clinical notes, lab reports, less accurate screenshots of MRIs but not full access to imagining. Naturally that particular private hospital was not an option for me to have recourse to on this occasion.

I got a taxi to the Emergency Department of another familiar south private south Dublin hospital where I had undergone many procedures, however having found it had got way too “busy & commercial” a few years after its establishment. As usual these times with every hospital the ED was incredibly busy, either many hours wait in a poorly designed “waiting corridor” where my rollater was getting in the way of everybody. The department was designed for much lower levels of traffic as was the case when it first opened, until it became a victim of its own success.

The usual long day over the usual ED pathway of triage, bloods, ECG, seeing doctor, X-ray and doctor review unfolded. I got the usual initial response that private hospitals give which I will paraphrase as “we don’t do neurology”. The doctor saw how shattered I was, that I live alone and obviously beyond hope at this point with the poor services over in the public hospital, the frustration of being denied (on account of persistent HPV 16 status) access to the potential hope that a Disease Modifying Drug might bring, and this all following years of having any of my reports of neurological symptoms overlooked and ignored in the realm of more tangibly obvious and more immediately florid & life-threatening illness.

Put on suicide watch

I was emotional when I expressed how disheartened I was over lack of neurological services being offered anywhere and that the way I was fast heading I would opt for euthanasia in the absence of any help or hope. Very fast, I was taken to a room where a very good nurse questioned me extensively for over 30 minutes. I had a care assistant assigned to sit in with me all night, and she was required to follow me into bathroom. The nurse would come in, other staff too, chatting to me and making sure I was ok. I have to say this is the best model of such care I’ve known to exist in such a scenario.

The lesson here is it’s very important to tell staff how you are feeling and if you are “in the right place” you will receive an appropriate care pathway. The luck of the draw is “bring in the right place”.

I was started on a course of additional IV antibiotics, considering how any infection at all can be so detrimental in the setting of MS.

Plan of care

In the morning I was seen by a general medical consultant, who was dismayed & disappointed to hear of the downgrading of nurse services in the MS Clinic at the public hospital, such that I believed I had no recourse to help. As I explained, I attend as many MS Ireland related events as I have been able, and have found this precise common experience with others like me, and the consensus is it’s only getting worse. I’ve started to participate in the research of neurological rehab services in Ireland, in my case the east coast area. The researchers were “stunned” to hear all the participants relating the exact same stories of having no access to any form of continuity of care.

Trouble here in a private hospital is that they do not have a pathway of communication with either the HSE (public health system) or indeed any other private hospital set-up. Ireland has standalone points of care which are unable to communicate with each other.

I was shortly given an initial assessment by a Speech Therapist who is going to order a fluoroscopy for fine detail, but immediately she identified I have the most common MS-related issue relating to saliva pooling up and pouring down wrong way when I go out and about. I have lost sensory innervation in my oral cavity, so I can’t tell when it’s pooled up and therefore no swallow is automatically initiated, so it takes me by complete surprise when I get repeated lung-fulls of it. Medication to deal with this can lead to very unpleasant oral problems, and she suggested using an app on my watch as a “swallow reminder”.

It was the first time I’ve ever been assessed by a speech therapist, or one even suggested. The fluoroscopy can be done as an outpatient if necessary, and is to ensure there’s no other issues the mechanism, although as she said, in MS a test can she clear one day, positive the next, and even hour to hour nerve function can change and take you completely by surprise. I’ve had difficulty with facial and tongue muscles before? With near choking of food. I also have episodes of reflux which are best managed with Domperidone to keep bile flowing in the right direction, as well as the usual proton-pump inhibitor to diminish the stomach’s own acid production.

The speech therapist is flagging me for Occupational Therapy & Physiotherapy consults. She discussed a lot of MS symptoms she expected I might possibly have, including the extreme short-term memory issue, where even with reminders by the time I respond to a reminder I’ve forgotten it even happened. She is the first medical professional who seems to be 100% trained in understanding nearly all aspects of MS from a functional point of view.

She gave me the time and opportunity to relate to her other odd symptoms I know to be related to MS. Like yesterday I had the most strange but sharply defined perfect tiny orb of light float across my left eye, and it happened again today. This is called a “phosphene”, caused by inflammation of the optic nerve leading from brain to eye, as that nerve get a bit pressed in its space and can deliver strange visual phenomena and sight deficits.

Below I have been able to reproduce this extraordinarily well-defined sphere as it appeared briefly a couple of times in the vision of my right eye.

I had a precautionary Chest CT to make sure lung infection is clearing as it seems to be doing well in spite of its association with the overall exacerbation of MS

After 24 hours of care and treatment I’m starting to regain better neurological function, though when I say this it’s always with a codicil. But time in, time out, clearing an underlying infection and its inadvertent effect on the immune response as it crosses the blood-brain barrier and provokes inflammatory dysfunction on the brain and spinal cord, is vital.

Now I’ve forgotten what I planned to write next… never mind!