MS in all its glory

Carrie6OD · 14-02-2017 9:09am

byhookorbycrook wrote: »

With ritixumbab?Best of luck, keep us posted. Do you mind me asking if you are with Laya?

Thank you, I need it! Yes with rituximab, I was told it's really the only option for me. I will let you know how it goes. They are very hopeful about the results following on from what's gone on in Sweden. I've been reading up on the Swedish trials etc and it looks good ... Well I think I'm choosing to see only the positives! I'm with aviva or Irish life I think it's called now. Will keep you posted

Salmotrutta · 15-02-2017 12:15am

byhookorbycrook wrote: »

With ritixumbab?Best of luck, keep us posted. Do you mind me asking if you are with Laya?

Why Laya, if you don't mind me asking?

byhookorbycrook · 15-02-2017 12:21am

Because I had heard Laya were covering it and Vhi weren't yet .

Salmotrutta · 15-02-2017 11:43am

byhookorbycrook wrote: »

Because I had heard Laya were covering it and Vhi weren't yet .

Thanks, good to know. I'm with Laya myself, in case I need it in the future. Frustrating how different companies have different policies on what they will cover - if the medical team deem it necessary it should be covered, end of.

byhookorbycrook · 15-02-2017 10:01pm

One of the other great frustrations is that taking a particular DMD now might rule you out of another down the line. Time to get ride of the injectables too, waste of time.

Lollipops23 · 16-02-2017 11:51am

Having some real trouble with constipation at the moment; diet is grand, drinking plenty of water etc...

I know this can be linked to MS, so trying to find out how common!

byhookorbycrook · 16-02-2017 12:05pm

Yep, very common. Movicol your only man. Doesn't make the bowel " lazy" either.

Lollipops23 · 16-02-2017 12:43pm

Thank you! Is that over the counter?? I used a laxative last week to help ease it, hoping it would kick start my system. Nope! Didn't want to take them again this week, as I was afraid of the "lazy bowel"!

byhookorbycrook · 16-02-2017 7:23pm

Not sure if it OTC , my Neuro wrote it into my LTI book after my last stay in hospital, as being laid up tends to exacerbate the issue . Moving gets you errr... moving so keep as active as you can .

irishrver · 16-02-2017 11:17pm

Movical works very well but tastes terrible so I changed to laxido orange it does the same job but it's much easier to swallow and it can be put on the lti card as well

byhookorbycrook · 16-02-2017 11:18pm

I don't think any of these yokes taste great

irishrver · 17-02-2017 8:07pm

They are unfortunately an unnecessary evil but at least the Laxido tastes like a very weak diluted orange drink. My daughter who is nursing in the UK put me on to it they gave up the other one years ago &#55357;&#56841;

eimsRV · 21-02-2017 5:55pm

Hi all. Having a lot of anxiety lately. Not sure if its from the MS or medication, I'm on Plegridy, or not related at all. Has anyone had any success with cognitive behavioural therapy?

byhookorbycrook · 21-02-2017 9:21pm

I'm going to start by saying Plegridy is an interferon and there are far more effective meds out there for anyone newly diagnosed.. Anxiety is common in MS, there's such uncertainty in our futures.
CBT may be helpful.

eimsRV · 22-02-2017 2:37am

Thanks byhookorbycrook. I'm diagnosed just over 2 years. Neurologist in Beaumont has been reluctant to move me on from interferon.

byhookorbycrook · 22-02-2017 11:11pm

That may be a budget constraint decision . I have heard that some of the public hospitals won't put people on the likes of Tysabri purely due to cost . The current thinking is to hit MS hard from the get go.

As to CBT , yoga, mindfulness or whatever - anything that helps to reduce stress or anxiety has to be good .

embee · 23-02-2017 2:28am

I had to lobby my local TD to get funding for lemtrada in Beaumont, I was on tysabri before that and i also had to lobby him for that too. I am not even three years diagnosed and I am on my fourth medication. Which neurologist are you under in Beaumont?

Carrie6OD · 23-02-2017 3:04pm

So i had my first rituximab infusion... 1 hour in and I developed a severe reaction. Throat swelled, rash everywhere. They took me off it straight away and gave me another large dose of steroids. I had had steroids and piriton infusion before the rituximab but I'm obviously allergic. So neuro came and took me off straightaway. I am so disappointed. The neuro had put all my hopes on this being the only thing that would work for me. I don't even know where we can go from here.

byhookorbycrook · 23-02-2017 8:27pm

That's such a pity, Carrie, is there any other med mentioned at all?

Carrie6OD · 23-02-2017 10:35pm

byhookorbycrook wrote: »

That's such a pity, Carrie, is there any other med mentioned at all?

Such a pity. Literally all my hopes were pinned on this! I have PPMS so this was really all we talked about. I'll have to arrange a meeting with neuro to either discuss another option or see how we can manage the allergic reaction. I'm so disappointed. Back to square one...

byhookorbycrook · 23-02-2017 11:52pm

What about Ocrelizumab? I know our neuro is talking about it for one or two people?

Carrie6OD · 24-02-2017 11:47am

byhookorbycrook wrote: »

What about Ocrelizumab? I know our neuro is talking about it for one or two people?

Yes I'd say he'll talk about that. As far as I know they are one and the same thing.

eimsRV · 26-02-2017 4:31pm

embee wrote: »

I had to lobby my local TD to get funding for lemtrada in Beaumont, I was on tysabri before that and i also had to lobby him for that too. I am not even three years diagnosed and I am on my fourth medication. Which neurologist are you under in Beaumont?

Embee I'm under Dr Costello. I go publicly but I do have private health insurance so should look at switching.

byhookorbycrook · 01-03-2017 11:09pm

Is anyone considering stem cell?

Lollipops23 · 02-03-2017 12:12pm

byhookorbycrook wrote: »

Is anyone considering stem cell?

Is it available to regular Joe Soaps?

discobeaker · 02-03-2017 12:58pm

byhookorbycrook wrote: »

Is anyone considering stem cell?

After seeing that panorama documentary about stem cells results on MS,I'm very much considering it.

discobeaker · 02-03-2017 1:00pm

byhookorbycrook wrote: »

Is anyone considering stem cell?

After seeing that panorama documentary about stem cells results on MS,I'm very much considering it.

byhookorbycrook · 02-03-2017 1:54pm

It's not available in Ireland at present and to qualify you have to fit quite specific criteria .

byhookorbycrook · 03-03-2017 9:53pm

Had an email from someone asking about hospitals charging €75 for Ty at each infusion, if you are one of those, can you pm me please.

Sun82 · 07-03-2017 2:18am

[font=arial, sans-serif]I'm having an angry/sad/scared day today.[/font]

[font=arial, sans-serif]I was diagnosed about 6 weeks ago after a sudden episode of left side numbness, facial droop, coordination issues prompted a trip to the emergency room. All the coordination, strength tests etc were definitely ramped up once i told them i had Optic Neuritis 8 years ago, suddenly neurology were on their way down and i knew what they were thinking.[/font]
[font=arial, sans-serif]A couple of days later my symptoms had pretty much resolved themselves and i had my MRI which unfortunately shows a big active lesion and a decent qty of old ones. [/font]
[font=arial, sans-serif]Here's where the anger comes in.....i always knew Optic Neuritis was one of the trademarks for MS but the only time this was ever discussed with a medical professional was when i got the question 'any family history of ms?' I said no, and that was that.....so i figured i was just an unlucky randomer![/font]
[font=arial, sans-serif]I have requested medical records from the 2 hospitals i dealt with at this time (when i had the initial eye pain and crippling headache i was discharged with 'tension headache' from one hospital) and then i saw the neurology/opthalmologist a few months later when my vision had not recovered. [/font]
[font=arial, sans-serif]Had MRI at the second one and then steroid treatment to help recovery of vision. [/font]
[font=arial, sans-serif]Medical records after this MRI refer to ''non-specific white signals although the number and distribution met the criteria for demyelination'' and then when referring to the steroid treatment 'i will give her iv methylpredisoline to see if anything can be salvaged at this point'[/font]

[font=arial, sans-serif]To me it sounds like a diagnosis could have been made 8 years ago or at least investigated further. I am ANGRY and i know that doesnt help anything but i am also setting up my life in Australia now but feel this will be a massive hurdle when dealing with visas/my employer etc.[/font]
[font=arial, sans-serif]Sorry one of those days that i dont want to become the norm and really this is just a vent/rant pity party for one[/font]

MS in all its glory

Comments