MS in all its glory

Had an embarrassing fall on the street. I was stopped standing for traffic and just fell over ! Mixture of tiredness and not taking my baclofen on time. Also I was wearing shoes so back to buy a pair of light runners.

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Just land into the Ed early one Monday morning and say the symptoms started the day before. Needs must

I've never been in the public system, saw a private neuro from the start (had good insurance, ophthalmologist who diagnosed optic neuritits recommended him, and I also knew his secretary so could get a quick appointment). Didn't want to be waiting months or years for a public appointment. He has rooms in a private hospital, where I see him. I've also had various courses of IV steroids there for relapses, and I deal mostly with the nurse in the IV unit.

I've been pretty happy, although I haven't seen him in a few years as my MRIs have been stable, I know he is checking those and blood results whenever I need a new prescription. Anytime I had a relapse or concerning symptoms I was able to get an appointment, but he doesn't insist on seeing me every year (and charging!) just for a 5 minute physical exam when my condition is stable, so I feel more like a patient and less like an ATM. MRIs are done at the same hospital and I generally get referred on time for those.

Basically, if you have good health insurance that will cover some of the cost, I would have no problem going private. My insurance covers MRI, any IV treatment I need and a large part of consultant fees so its a no-brainer for me.

Hi,

I see my Neurologist privately, and have done since I had my first (very) noticeable symptoms in early 2015. (In hindsight I think now that some of my symptoms were present well before that but I ignored them / didn't understand etc. but that's a different debate).

When seeking heath care privately there is a cost involved but like Salmotrutta my PHI covers a lot / the bulk of it.

Initially the insurers weren't quite as generous but I changed / upgraded my cover a few years ago to reduce the excess and to improve the rebate etc. There was a waiting period before I could avail of the extra benefits (2 years if I recall correctly) as my MS was a "pre-existing condition". As it happens the waiting period wasn't an issue as my MS was stable so I had little reason to seek help. (I may therefore be mistaken about the time frame for the waiting period). This year however was different, as I had quite a severe flare-up in the early part of the summer on foot of which which I have had 4 consultant consultations, a mixture of face to and Zoom, a similar number of MRIs, two visits to hospital, at least 8 GP visits, and I think 3 or 4 blood tests all in a relatively short time frame. The PHI company paid the bulk of these (all of the MRIs and hospital visits were 100% covered) and there is more stuff in the diary (hopefully not as much, as things have settled) but the net result is that the PHI company paid out a fair wedge of money this year, well in excess of what I paid in premiums for at least the last two years.

For me the massive benefit of going private is my Neurologist (or at least his secretary) will invariably call me within 24 hours of my reaching out and when deemed necessary an MRI was scheduled and carried within 48 hours, with at least a follow up call within hours of the results, (even after hours / over the weekend) and thereafter on two occasions a face to face / physical exam "tomorrow / later this week", even at the current time (covid etc). I'm a worrier so to me that is priceless.

On the negative side I don't have access to a nurse which from what I hear is very useful to many.

I can't compare to the public system as you ask, as admittedly I have no experience of it, but hear anecdotally of family and friends who are the public system and from what I hear it can be slow, unless you are very ill, especially at the current time, for obvious reasons.

As I said, my experience of the public system is non existentant so open to challenge re my assumptions, and I know I am privileged in that I have access to good PHI but for me it's worth the sacrifice elsewhere if only to stop the worrying / allow me move things quickly when I feel I need to / am worried about something.

On reading your post it seems like the Radiology department genuinely haven't got your referral. All my referrals for MRi etc come via my Neuro and are via the clinic he operates from so that might help expedite matters here? FWIW my initial referral from my GP to the Neuro was "urgent" but the GP who I know for nearly 30 years said she was referring me to this guy as she rates him / has only ever had positive experience working with / referring patients to him.

@ PPN2893 Hope this helps.

Hi all. I’ve been on Ocrelizumab for 3 years now. I got a letter to say that I will no longer need to give my bloods at the hospital 2 weeks before the infusions (as is normal practice) as they will send a nurse to my home or work place to do it instead. I feel like I’ve won the lotto! I’m hoping it’s a step towards home infusions (like they do in England with the NHS). Has anyone else done this?

Got booster on Firday afternoon ( pfizer) , was bit weary as wasn't great after 2nd Moderna in June ! No side effects this time around - bit of a sore arm but nothing compared to June !

I was in the same boat until last week. No call from HSE. My GP had a clinic last week for groups 4 and 7 and I got an appointment, this week they sent a text to say they are having a clinic next week for all patients, no age restriction. I would give your GP a call, or local pharmacies. The govt are ramping up the vaccination programme and asking GPs to do a lot more jabs, so you may get an appointment that way easier.

On another note, has anyone been switched to the generic drug instead of Gilenya? I picked up my prescription yesterday and they mentioned about switching next month. I said I'd check with my consultant, but with the State paying for it I'm surprised to even be asked. Presumably there is no difference except on price?

Something I have noticed increasingly, as my walking has got worse , I've noticed walking down hill is terrifying. Up hill not to bad as there's always pressure on at least one foot, but gravity and balancing going down hill is completely shot. Has anyone else noticed the same?

Good luck embee. I wish you all the best.

I have that problem too,im ok going up hill but downhill is tough. Going down small steps is the toughest thing for me. I've noticed ive got a bit worse since the pandemic started,my walking is getting worse. Its quite frustrating.

Thought it was just me that this is happening to. Walking is worse since last year and it's so tough to go anywhere. Increased baclofen and still hasn't done much to help the tin man walking. Little steps and uneven footpaths are not my friend either. Its quite annoying that the pandemic has done this to us.

Hi there, just a quick question how long does it take for lumbar punture results take to come back? I got mine done in cuh and it was being sent to UK! Thank you

One thing I've found is that cars are alot more obliging letting you cross the road if you have a walking stick