MS in all its glory

byhookorbycrook

tinofapples wrote: »

That's some trek for you, you must be floored after that day out, I know I would be .

I stay in a local hotel on the Sat. night, so makes it manageable.

adam88

byhookorbycrook wrote: »

I stay in a local hotel on the Sat. night, so makes it manageable.

Seeing a specialist on a Sunday ????

Is it south of the country by any chance ??

cj maxx

Spot light BBC1 at 1045pm about Dr Watt , consultant neuro who has been struck off

Carrie6OD

Is anyone here on ocrevus/ ocrelizumab? I think I’m going to start it and would love to hear stories from people who are already on it. TIA

byhookorbycrook

adam88 wrote: »

Seeing a specialist on a Sunday ????

Is it south of the country by any chance ??

Yes, she takes a day ward to do infusions on a Sunday. This also means, we know the dates for the full year well ahead of the time.

byhookorbycrook

Carrie6OD wrote: »

Is anyone here on ocrevus/ ocrelizumab? I think I’m going to start it and would love to hear stories from people who are already on it. TIA

Is it available here now?People in ours are on Ritux (a close cousin) waiting for Ocrevus approval.

adam88

byhookorbycrook wrote: »

Yes, she takes a day ward to do infusions on a Sunday. This also means, we know the dates for the full year well ahead of the time.

Is that in the private hospital???? I live in that town and my dr is in Cork, I’m not sure if I should move over. Going down to cork is a bit of a balls to see specialist

byhookorbycrook

Yes, though she works in the General too, but Tysabri only done in the other one.

Carrie6OD

byhookorbycrook wrote: »

Is it available here now?People in ours are on Ritux (a close cousin) waiting for Ocrevus approval.

I was at an MSIreland event and some people were on it. I’m hoping it’s a distant cousin to rituximab as I had allergic reaction to that...

adam88

byhookorbycrook wrote: »

Yes, though she works in the General too, but Tysabri only done in the other one.

She’s meant to be good. Atm I don’t really have much need to be constantly seeing a specialist. Between two minds to see my own one in cork the odd time I’m called down

byhookorbycrook

She's at the infusions each month, if we need to talk with her. Otherwise it's a quick check if we have any issues and a bit of a chat!

tinofapples

Anyone interested :

Medical cannabis ‘will change lives’, advocates say

https://www.irishexaminer.com/breakingnews/ireland/medical-cannabis-will-change-lives-advocates-say-968003.html



https://www.gov.ie/en/publication/90ece9-medical-cannabis-access-programme/

Fourwinds

If it helps then I for one would say yes. I am back in for an infusion tomorrow morning and also another MRI I shall Ask my Neuro and ms nurse for their thoughts on it

byhookorbycrook

I presume you couldn't drive if you take one of those cannabis products?

Nigel Fairservice

byhookorbycrook wrote: »

I presume you couldn't drive if you take one of those cannabis products?

I think I read in the Irish Times that you would fail a roadside drug driving test (the article was published around the time roadside drug testing was introduced).

Fourwinds

Nigel Fairservice wrote: »

I think I read in the Irish Times that you would fail a roadside drug driving test (the article was published around the time roadside drug testing was introduced).

That would certainly change things. I thought they would be low thc.

byhookorbycrook

Fourwinds wrote: »

That would certainly change things. I thought they would be low thc.

I absolutely agree. Baclofen has proven to be as effective for the majority of people who have spacticity. But those who don't respond to it, need some alternative to be able to get through.

Lollipops23

My MRI results came back and they said, while there's no new lesions or lesion activity, one old one looks bigger than last year.

Now, the thing is- I used a different MRI clinic this year. I hated the one I've used over the last few times, so switched provider.

The nurse said that's most likely the reason- a different machine than usual. Fingers crossed!

byhookorbycrook

A newer/more powerful would pick up more, of course. Hope that's the reason.

Lollipops23

They discussed my MRI at conference on Tues and they're happy with it. Relief!!

Also spoke to the nurse when she called to tell me, told her how sick I've been over the last few months (back to back colds since summer, as well as recurring mouth ulcers). She thinks my lymphocytes may have dropped a bit low, so has ordered more bloods (joy!!) If they're below .2 they'll need to take me off the Gilenya for a few weeks and let them climb back up.

adam88

Lollipops23 wrote: »

They discussed my MRI at conference on Tues and they're happy with it. Relief!!

Also spoke to the nurse when she called to tell me, told her how sick I've been over the last few months (back to back colds since summer, as well as recurring mouth ulcers). She thinks my lymphocytes may have dropped a bit low, so has ordered more bloods (joy!!) If they're below .2 they'll need to take me off the Gilenya for a few weeks and let them climb back up.

I could be wrong but I think I read some where that coming up gilenya is high risk for relapses.

I’m on it 14 months and doing okay in terms of the MS. You wouldn’t know I’ve the condition apart from me always being tired. +1 on the mouth ulcers I seem to have them constantly at this stage but have been getting them on and off for the last 15 or so years. There’s a good ointment you can get in America. It’s a lidocaine fluid, allows you to eat in some level of comfort at least

Deco99

Hi, can I ask what notification one needs to give your health insurance provider if you've recently been diagnosed with MS. Diagnosed around 2 months ago. Been insured with same provider for 2+ years. Have been submitting all claims for scans and consultants over last year roughly

cj maxx

I don't know Deco. Sorry.
Hows everyone coping with the cold weather?
Personally I'm loving it. I hate hate the hot humid weather of late July and August. This weather suits me though as long as I take my baclofen.
Happy Christmas everyone

Gremlinertia

Deco99 wrote: »

Hi, can I ask what notification one needs to give your health insurance provider if you've recently been diagnosed with MS. Diagnosed around 2 months ago. Been insured with same provider for 2+ years. Have been submitting all claims for scans and consultants over last year roughly

I don't think I have any answers but you are in a fortunate position as its not a predisclosed illness. I would use your insurers online help or whatever is available to ask.

Nigel Fairservice

Deco99 wrote: »

Hi, can I ask what notification one needs to give your health insurance provider if you've recently been diagnosed with MS. Diagnosed around 2 months ago. Been insured with same provider for 2+ years. Have been submitting all claims for scans and consultants over last year roughly

I'd agree, if you had it before an official diagnosis then you should be fine I'd imagine but you should really check it out with your insurer directly to get a definitive answer on it. I'd imagine you'd need a letter from your neurologist confirming the diagnosis date.

I took out insurance a year after I was diagnosed and told them about the MS when I took the policy out. I'm 3 years into the 5 year exclusion on preexisting conditions. My diagnosis took 18 months and I'm not sure what an insurer would have done if I took out insurance during this 18 month grey area. I knew something was wrong with me but I was in a diagnosis limbo. I don't know how an insurer would look at that.

MyAccount

Deco99 wrote: »

Hi, can I ask what notification one needs to give your health insurance provider if you've recently been diagnosed with MS. Diagnosed around 2 months ago. Been insured with same provider for 2+ years. Have been submitting all claims for scans and consultants over last year roughly

I've never told my health insurer - never been asked, I just send in the claims and they get paid, no Qs asked - that said I have been with the same provider since birth so nearly 50 years (with one of the more comprehensive plans). (was diagnosed c.5 years ago - claim for two to three consultants visits at €200 a time and similar number of MRIs, and maybe 8 to 10 GP visits a year at €65 a go (insurer pays 75% of such visits, with no limit - also had another completely unrelated issue this year which necessitated a couple of consultants & physio visits - again just sent them in / all paid with no Qs.

On a related note I looked at moving insurance about a year ago (to see if I could save a few Euro on the annual premium) - told the potential new insurer about my MS - to paraphrase, "once I was looking for comparable cover pre-existing conditions were fully covered" - didn't move in the end as there no discernible difference in the cost.

MyAccount

cjmc wrote: »

I don't know Deco. Sorry.
Hows everyone coping with the cold weather?
Personally I'm loving it. I hate hate the hot humid weather of late July and August. This weather suits me though as long as I take my baclofen.
Happy Christmas everyone

Changes in temperature doesn't suit me - I seem be more prone to chesty coughs this time of year - maybe to do with the immunosuppressive meds?, so I tend to avoid running or cycling on cold days

eimsRV

I hope everyone had a good Christmas. I started a new treatment early december, Mavenclad. Its tablets taken for 5 days, then a 4 week break then tablets again for another week. And thats it for a year. So far I've had mild side effects, mainly headaches and my fatigue is a bit worse than normal. Looking forward to 2020

adam88

Hi guys. Just checking on something. How often should a person with MS visit their consultant. Diagnosed Jun 18, on gilenya and otherwise fit and well. I’ve only been to my consultant once in that time. No symptoms except the fatigue

eimsRV

Hi Adam, I see mine every 6 months, with an MRI annually. Its been like that since I was diagnosed 5 years ago.