Seeking treatment for MS, looks like I need to go abroad

At the end of my tether here, unable to get to see a neurologist in Ireland for what is believed to be rapidly evolving MS. Was in Blackrock Clinic for 2 weeks in April after developing very bad mobility issues and a dangerous fall at my apartment, where I live alone. Starting to develop choking episodes. Was seen by a visiting neurologist whilst in hospital, who told me MRI & exam etc look like MS and that I will need a quick follow up, but that could not be offered at Blackrock itself. Admitting consultant told me he is unable to find any clinic or consultant neurologist to take me on as their lists are full. 

My GP provided a referral marked “urgent”, and highlighted his great concern that I get afforded care asap. The one and only appointment I have been able to secure is in November at a private hospital. It is now becoming apparent I will have to seek care overseas, probably in English speaking UK.

Has anyone had any kind of similar experience and how has it worked out? I am at this point quite desperate and am trying to get as much info as possible on this course of action. 

Thanks. 

topal

Worth ringing MS ireland for advice.

I'd consider presenting at A+E in one of the hospitals with a neurology department.

https://www.boards.ie/discussion/comment/120587186#Comment_120587186

Yes I’ve had a good chat with a lively person from MS Society but some recommended neurologists simply have full lists or are no longer specialising. I did present to SVUH ED after barely being able to get out of bed one day, but was told the waiting list to see the team is enormously long, and that the best strategy would be to arrive when the team would be on duty on a weekday morning when it would be less busy.

I emailed HSE re treatment abroad, they are sending a pack on treatment in NI, Britain being excluded since Brexit. But I heard there are almost no neurologists up North. I might consider Netherlands as good English is widely spoken there.

I’m encountering obstacles getting my medical records and scans from Blackrock, may talk to a solicitor with whom I’m doing other business.

Jim2007

https://www.boards.ie/discussion/2058296166/seeking-treatment-for-ms-looks-like-i-need-to-go-abroad

Very sorry to hear about your situation and while I known practically nothing about the condition, I have however lived for over three decades in mainland Europe and so all of my medical care has been provided in non English speaking countries. I've been to the ER, had tests done and had cataracts removed. As well as taking various guests to see doctors etc over the years.

Now while I do speak German, in my experience pretty much everyone involved in healthcare speaks some English and if they don't there will be someone else that will. And while some specialists might refuse to treat you in English, most will. So I'd strongly suggest you consider getting care where every it is offered. If a specialist is willing to treat you, they are obviously comfortable doing so in English.

https://www.boards.ie/discussion/comment/120587513#Comment_120587513

Good advice!

GreeBo

https://www.boards.ie/discussion/comment/120587513#Comment_120587513

I'd double down on this advice. Its more important that they know what they are doing than you know what they are doing I reckon!

topal

https://www.boards.ie/discussion/comment/120587254#Comment_120587254

Did you see a neurologist in ED? Did you get an initial appointment date from Neurology in Vincents?

I remember waiting over a year to get an appointment 15 years ago..

https://www.boards.ie/discussion/comment/120588059#Comment_120588059

It’s all so complicated.

1. Attended GP when numbness & pins & needles were spreading up from already numb feet, and starting a bit in my hands too. Blood tests proved entirely right bang in middle range for everything. He hoped it would “go away”.
2. I started having bad tripping episodes, and right leg giving way. About 2 weeks later feet felt light marshmallows, left leg felt stiff and unwilling to move, hands did not want to work, mouth was going numb. Had a very bad fall at home, knocking myself out and losing a lot of blood. Next day got myself to Blackrock ED as the media messaging was don’t go to public ED.
3. Blackrock admitted me for 2 weeks under a general consultant who called a neurologist in from another hospital. That neurologist said exam and scans suggest MS as most likely diagnosis but I would need quick follow up. However the neurologist said her list was too full to add me to it.
4. The general consultant at Blackrock said though I needed follow up he couldn’t find anyone to refer me to, all patient lists full.
5. GP got no letter from Blackrock whatsoever, and was shocked at how my mobility had become and how fast it was happening. He sent a referral marked URGENT to someone he was convinced would take me on but one after the other they declined because they argue of it is urgent they cannot accept me as their waiting list is too long. The sole appointment I was offered is November.
6. One extra bad day I couldn’t feed myself, I could only get from bed to bathroom with great difficulty, literally holding onto everything, couldn’t feel my legs at all. Called an ambulance, took me to Vincent’s ED, hours waiting for ambulance, it was bedlam with dozens of extremely elderly people critically ill. Got to see doctor about 10pm or later, he was extremely sympathetic, but as bloods, chest X-ray were entirely normal, couldn’t admit me, but advised me to return in an ambulance during on a weekday morning, just as neurology team were arriving and hospital would be at its quietest. “That’s the way the system works”, he advised.
7. After that I tried to work on tracking down every single neurologist in the Dublin region, every source of info, trying to open every door I can, but the doors keep closing. Now I am starting my research on treatment abroad.

I might have to try that ED by ambulance “tactic”’, only it wasn’t a tactic at the time, I was in desperate trouble as I live by myself and just had lost all ability to care for myself over a couple of days. I just wanted help, but it’s not there, it just isn’t there for new patients. I do not want to be calling ambulances unless I actually need them on the day, they are a precious resource not to be abused. But if/when I have the next very bad day that is what I will do. But I will also research NI for a start, it’s just a quick train or bus ride up.

Dr Karl

Don't limit yourself to the UK. Maybe look at Norway (not in EU but part of the EEA), they have invested their oil money wisely including into healthcare. Maybe Czechia. Italy has a good health system. Switzerland similar to Norway not in the EU, but not in the EEA either, but they have an agreement with the EU for healthcare.

fits

I’m fairly sure taking an ambulance to ED won’t give you any advantage as you’ll go through triage same as everyone. But I stand to be corrected on that.

if you can get treatment abroad do that but you’ll need to be on the books of a neurologist here too so keep following that up. Best of luck with it.

https://www.boards.ie/discussion/comment/120598066#Comment_120598066

That was the advice given by an ED registrar at SVUH, how true it is I don’t know.

Btw, it’s not arriving by ambulance per se, it’s presenting to ED at a quiet time when neurology team come on duty that I was recommended. In fact I would far prefer to come by taxi, but as my mobility is rotten I can’t easily stand around, it’s not very feasible for me to be standing in queues etc. My mobility is deteriorating every week, but I could plaster the living room here with emails telling me about year long waiting lists. I’m going to have to go abroad, but I will push more political buttons too. I may even protest outside Dáil Éireann.

I‘m getting a little bit of political help.

I’ve had a breakthrough, Prof Orla Hardiman has agreed to take me on as a patient! My sense of relief is immeasurable, a huge weight off my shoulder to get to step one of the ladder.

I got good news in the post today, a certain prominent neurologist in Beaumont will see me next month. 😊