MS in all its glory

I was given the go-ahead to travel to Japan in a group trip by the general medicine consultant, but it’s proving to be an absolute nightmare for me. Hotel has escalator into lobby, or else a lot of steps, no elevator alternative. I simply can’t do escalators, full stop, not the way my mobility has become. Can do steps very slowly. Holding everyone up, and was asked by a couple of people how did I develop a “phobia of escalators”. They are asking somebody who did a freefall skydive from 10K only a couple of months ago. The world is not made for people with disabilities.

I’m just about to start my homeward journey from a trip to Japan where I was given the go ahead to travel, but not really able for it. In that short space of time my deterioration has been alarming and I’m without a diagnosis. I’m very very scared. Barely fit for the flight, feel I’m going to fall over all the time. I’ll be lucky to get through Tokyo and Dubai airports still upright. Apart from the feeling I’m reeling over (I walk bent forwards using a stick) all four limbs feel that weights are attracted, I’m having very painful spasms in legs, shooting pains into fingers and toes, breathing muscles feel “tired”, right eye has somewhat foggy vision, always been told the retina and optic nerve area are “weak”. Had a a Takotsubo neurological heart attack in 2017. Nobody has yet joined the dots, but I’m beginning to.

The neurologist who visited me in the private hospital mentioned that “MRI and neurological picture are consistent with MS but I need to see previous or further scans”. I don’t feel private medicine will help me, though.

I’ve been having symptoms for decades. Even as a child my mother noticed I was inclined to fall sideways and was very cautious on slopes at times. But I had colitis, had a colectomy, that dominated my medical picture, and GP would ¯\_(ツ)_/¯ when I mentioned some odd issues, but same doctor mistook the onset of my father’s first major stroke as “lying in an awkward position”. ¯\_(ツ)_/¯

Had LP, inconclusive, former G abnormal, current MRI abnormal, but got letter that neurologist has ordered more specialised scans more specifically aimed at diagnosing MS.

I was away in Japan on a 12 day trip, very difficult except Japanese drivers are extremely patient at slow crossers, I was offered lots of gebuine help from trek gentlemen hobbling in the rain on side streets at night. I love walking about, but find both exercise and heat provoke symptoms incredibly. If I’m too hot I can hardly move out of the bed. If I cool down I’m better able. The aircraft was cool to the long of being slightly shivery, for some odd reason this made me perform better when moving!

Canaries are good! Relatively speaking. I found arriving to Dublin Airport after midday today after two flights from Japan in chilly aircraft did me a lot of good! I could walk sometimes without stick, I could hold mobile in hand steady. Apartment warmed up, I now have hands that don’t want to cooperate.

One day in April I became extremely weak, was fainting, simply because I was unable to prepare anything to eat. I was nearly out of it and called an ambulance because honestly I could have ended up with another fall from which I’d be unable to get myself up. ED was bedlam, a huge amount of extremely elderly people with circulation issues, I couldn’t believe the amount of black and purple legs I was seeing. After many hours I got seen by a very nice doctor. He was trying to find a specific criterion to admit me so I could be seen by the neuro team, but all bloods, chest X-ray etc were ok. He explained that had I arrived earlier when the neuro team were on duty, he could have got me seen too. He advised me strongly to return to ED on a relatively quiet weekday morning, he said just use whatever excuse you can, pick a bad day when you are not able to cope. That’s the way the system now works, apparently.

I was very unwell Sunday & Monday with a cardiac issue, but I was to have nasal splints (following ENT surgery) removed in a different hospital on Wednesday, and didn’t want to jeopardise that. What’s more they would have entirely focussed on stabilising the cardiac issue and likely overlooked the neurological one.

The ED registrar who saw me was extremely sympathetic and said “this is what you are rewarded with at a time in your life you should be enjoying, life is so unfair”. He said he had put me on the waitlist for the neurological team, but that if I didn’t make an impromptu appearance in the meantime I’d be waiting a very long time.

Sounds like something I will need to investigate.

I emailed my GP re unavailability of doctor he referred me to, but GP reception staff just returned an email to say GP is away for a couple of weeks. I’m absolutely stumped wherever I try to get somewhere.

I’ll do my research about which country might be best for access to neurology.

I sent a formal request to two hospitals for my medical records, particularly MRIs, completely being ignored.

The whole medical system is very sick in this country.

I emailed every neurologist in Dublin, whose email address I could find, got my selection of “the list is full” replies, but got one very helpful reply giving advice, and another one invited me to forward a referral letter 🤞🏾

Met very nice & helpful lesson from MS Society today, at least the beginning of emotional support from people who have close knowledge or direct experience of it all. 😇 I had been very very down, but feeling more positive and empowered. Also in last 4 days my legs are working a lot better (dare I say it 😶 but even though symptoms come and go and come back again it shows the potential for respite and that it’s not entirely relentlessly progressive as kind of has been the case since March. I’ve sone more energy too, most of the time. One way or the other I was going through a particularly bad patch.

One thing that the GP prescribed to help me sleep, but that is available freely over the counter and in airport shops in, eg North America, is Melatonin. It overall works better than tenazopam etc, and I wake up more refreshed, well as refreshed as one can in these circumstances. It’s relatively safe & non addictive, and can be effective. But as always, take medical advice before trying anything new.

Oh dear oh dear!! Thanks for that advice. I’ve run out anyway.

Just checked up about melatonin. Will have a discussion with neurologist when I actually get to see one.

Anyone else get the experience of feeling as if hot water was pouring down your abdomen? I get this on and off, just reminded of it as I’m getting up this morning, had to check with my hand if I had wet myself or had a stoma leak.

I booked trips to the tropics this year before I realised what the creeping number & paraesthia was amounting to, and now I’m dreading it. Will just have to take it very easy and do little and just enjoy the privilege of being able at all to travel.

Today in a shopping centre I was quite struggling to get my legs to move at all, both affected by spasticity. A woman came up to me as I was packing the car and said she admired how very determined I appear when I’m obviously struggling. In a very busy coffee shop the lad serving told me to sit down and he was bring over my coffee. You get to realise just how visible your disability has become. I decided to just relent and order a light folding rollator for the days I will be needing it as the stick isn’t always quite sufficient. I hate the damn things. At least with just a stick anything simple could be wrong like recovering from a sprained ankle.

My place at home is like a furnace, big south facing window in living room. All prickly, nothing working, tetchy, brain fog, frustrated. Very hard to get out of bed tbh.

I could not believe when I opened a letter today from SVUH telling me I was being given, in terms of neurology, a prompt appointment very same morning in July as I have a private appointment with Prof Hardiman in Beaumont. I haven’t mastered the art of bilocation yet, but I’m being advised by friends and relatives to go for the public one and cancel the appt with Prof Hardiman. Any thoughts?

Had a bad fall at my own apartment jetty at weekend, aided by wine of course. Ordinarily I would have no excess effects like that after similar before recent developments. After coming home from shopping this evening, didn’t feet today, both feet stuck badly together with bilateral foot drop, nearly went tumbling again. I have ordered two splints for myself. This disease is scaring the sh1te out of me.

I’ve just returned from a week trip to Thailand. Having requested wheelchair assistance I was treated very well throughout, with a bid to Etihad booking, I was able to upgrade in 3 of the 4 legs. Thailand is very good good value for money as far as we are concerned! Food splendid!

Had to transit Dublin -Abu Dhabi - Dublin. Private transfer to resort. 2-/ treated splendidly there. Everyone local got friendly with me, the wobbly woman on the clacking stick.