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.

Decades before any such thing as any kind ifcdisability befell me I was extremely active in public championing for folk who found themselves in such a situation. I am hating the way my hands keep being inclined to drop things. I’m in a tour on which happen to be doctors participating, they are automatically presuming I’ve been compromised for years, nobody is getting it that after Christmas it’s been a downhill battle. Just nobody is getting it, apart from GP who appeared a bit gobsmacked.

cj maxx

I feel for you @[Deleted User] . I went through alot too concerning my hands, though I had been diagnosed for a couple of years when it affected me . I couldn’t feel things in them even though I could see it . I can trace symptoms back to 5/6 years of age . Handwriting was one. One week it was tidy the next a scrawl.

nedsgarden

Hopefully.

https://www.bbc.co.uk/news/health-65135637

cj maxx

Hopefully . Personally I’ve resigned myself to the wheelchair then a hospice or home. My mobility and general wellbeing has deteriorated at a shocking extent in the last 2/3 years . I can still walk with a cane but insomnia has me wrecked. On a Facebook group I asked about insomnia and nearly everyone replied that they had some form of it .

Not working hasn’t helped as the days just run into weeks and I’ve nothing to break it up.

Anyway I hope everyone is keeping better. Just a rant 😡

gamerguy1

https://www.boards.ie/discussion/comment/120449873#Comment_120449873

Cjmaxx, I was walking good with 1 stick last year but in the last 6 months my walking has deteriorated quickly and I'm using 2 sticks or rollator and struggling with that. Il be in a chair or home before the year is out. No idea why as my MRIs are all clear.

cj maxx

https://www.boards.ie/discussion/comment/120452275#Comment_120452275

Same here. In fact the only lesions I have are extremely old. I’ve never had a MRI that showed any new ones I don’t think. Still I’m deteriorating at , to my mind, an alarming rate.

gamerguy1

It's frustrating that you are deteriorating and MRIs are stable and no idea why as I'm in the same state as you and the last 6 months have been a massive change for the worst in my ability to do anything and no idea why. Il be meeting my neurologist soon but I don't know what to ask for treatment wise. Maybe ocrevus or fampridine or steroids to strengthen me. Have you asked about new treatments to help.

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)_/¯

cj maxx

https://www.boards.ie/discussion/comment/120456875#Comment_120456875

Have you had a lumbar puncture yet

I was seeing a neurologist for a good while untill my LP give me a diagnosis.

https://www.boards.ie/discussion/comment/120460294#Comment_120460294

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!

cj maxx

https://www.boards.ie/discussion/comment/120463142#Comment_120463142

I find that heat affects me alot. Especially when it’s coupled with humidity. Even years ago the late July / early August period was impossible for me , though if i was in the Canaries where even though it’s hot , its nowhere near as humid , i was much better. I must order new cooling braclets to put on my wrists and ankles. They were great for hot weather.

https://www.boards.ie/discussion/comment/120463241#Comment_120463241

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.

cj maxx

https://www.boards.ie/discussion/comment/120463386#Comment_120463386

I went through a bout of that a couple of years ago where even though I could see what i was doing with my hands, the sensation wasn’t there . Something ‘phasia I think google threw up . It hasn’t happened in years, but thinking back it may have been summer time .

GBX

recode the site, glad the journey home was ok for you.

I'm heading on my first flight soon since my ms started raising it's head. Actually going to Lanzarote, so glad to hear it's not a humid place.

cj maxx

Having a bad few weeks lately . Spasms in my leg are pretty bad. I’m putting it down to , i forget the name , a spurious relapse ? My symptoms get alot worse when I’m sick .

Fourwinds

Just want to vent a little. After avoiding Covid for whatever time we have done now I had my Tysabri infusion Wednesday and Thursday I was feeling wrecked so I rang my doctor and she sent my prescription and asked if I had taken a Covid test which after all this time and 6 or 7 vaccines I tested positive 🤬 and none of the pain meds work I asked my wife last night to take me out the back and shoot me. Our daughter got married last week so a very busy few week and no one there had or has it from then so we have no idea where I picked it up I even rang my ms nurse just in case. The question is should I be doing anything to help with pain and total boredom ?

I went back to the private General medicine consultant at The private hospital where I stayed for two weeks being investigated for worsening mobility and sensory problems. A neurologist had been called in from another hospital, she examined me and looked at MRI etc and told me “it looks to me like MS, but I need to see more scans”. When I was discharged from the hospital I was told there was a plan for follow-up. However when I returned for the follow-up appointment the (non-neurologist) consultant told me simply that the neurologist had declined to take me on as a patient. Her area of interest is headaches, vertigo & strokes, and I don’t think she was in a position to take on an MS patient.

The general consultant went on to tell me Vincent’s wouldn’t take me on either, he couldn’t think of anyone who would and literally threw his hands up in the air with a big stupid smile on him. I returned to my GP who was alarmed at how unsteady I had become, even with a stick, and he has sent an urgent referral to one of the Vincent’s neurologists worded “Query? rapidly progressing MS”.

I know there’s no miracles and I’ve been extremely depressed with anxiety going through the roof. I developed 5 hours of nonstop atrial fibrillation, heart rate avg 200bpm, on Sunday. I once had a Takotsubo neurogenic heart attack and GP suggests that was most likely caused by what I have. Had some issues on and off since my 20s, particularly a dragging right foot and fingers that moved all on their own.

Sometimes my fingers don’t want to work at all, and it feels like there’s tight bands all over my limbs, with electric shocks shooting through. Reading can be nearly impossible at times with things jumping about. Really it’s my eyes doing the jumping.

For years milder symptoms were either ignored or put down to the ulcerative colitis for which I underwent a colectomy with ileostomy.

I’m being granted a disabled drivers parking permit for as long as I can remain driving. For de axes I escaped being under the neuro radar, all the focus being on my colitis or cardiac issues. It seems I’m developing secondary progressive disease with the relapsing remitting era being greatly overshadowed by my other health matters.

I’m really seriously annoyed how that general consultant sent me on my way without any idea how or where I could be helped.

GBX

That's brutal for them to send you on your way like that.

Hope you get some clarity from the Vincents team soon.

I just sent an email to the Vincent’s neurologist my GP sent the electronic referral to, to prompt an appointment, but got an automated reply to say he is t taking on any more patients! This is a recurring theme now, it seems no neurologist is available to take on new cases, their clinics are closed to newcomers. It’s like a living nightmare that I can’t actually seem to bring an end to. I am just going to have to do without any form of treatment, therapy, help, until I end up bedridden and then in a coffin. That’s quite frankly the way it looks to be panning out. I really don’t feel like continuing life if this is the way it is to be. This country has become 3rd world when it comes to the availability of healthcare in some situations.

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.

Dr Karl

https://www.boards.ie/discussion/comment/120556849#Comment_120556849

Have you looked into getting treatment elsewhere in the EU/EEA/Switzerland under the Treatment Abroad Scheme or Cross-Border Healthcare Directive. I have heard that the health authorities don't like people using it, so maybe contact a TD to push your case. Or if they turn you down complain to the Ombudsman and/or the European Commission which has an office in Mount Street Lower. Or in an extreme case make a complaint to the UN, I believe it has been done and relatively small sums of money have been awarded against Ireland. The Government won't like that as they always want to be seen as the best boy/girl in the class and don't like to be shown up on the international stage. They don't care about the average citizen here so why should you care about showing them in a bad light to the international community.

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’ve contacted a well-known & pro-active TD in my constituency, seeking any wisdom she might have on the process of seeking treatment abroad. I’ve looked up se real private & well reviewed neurologists in the UK who specialise in MS.

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 🤞🏾

I may or may not be getting somewhere atm. A collage of some of the various replies I received from neurologist’s admins. The best I could hope for is months and months of waiting, but I don’t really have that time at the rate I’m going.

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.

cj maxx

https://www.boards.ie/discussion/comment/120570806#Comment_120570806

I googled Melatonin on the NHS site and it said not to be taken by people with ms or other autoimmune diseases

https://www.boards.ie/discussion/comment/120577746#Comment_120577746

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

Got my first appointment offer to see a neurologist in a private hospital for 9th November. Fee €400. GP practice gave me a copy of the referral letter, which very clearly emphasises urgency, it’s marked URGENT on top, and states clearly he wants to see me being offered possible treatment before further damage.

On a good note, I’ve been approved for the disabled parking permit.