MS in all its glory

byhookorbycrook · 10-11-2019 08:29PM

tinofapples wrote: »

Would you mind filling me in as well, please ?

Your neuro or gp should be able to support your application for the badge.Go with whoever is more sympathetic, sometimes GPs aren't fully aware of the extent of MS needs.

eimsRV · 11-11-2019 11:31PM

byhookorbycrook wrote: »

Your neuro or gp should be able to support your application for the badge.Go with whoever is more sympathetic, sometimes GPs aren't fully aware of the extent of MS needs.

I've been thinking about discussing with my GP about applying also, she is understanding. I had a relapse in May, I'm back to work about 70% of the time now. But still finding it difficult to resume normal activities like shopping, going out with the kids, etc. due to fatigue.

Carrie6OD · 13-11-2019 01:01PM

Has anyone ever changed consultant? It took me ages to get into the public system after being originally diagnosed privately. I want to stay in the public system of course but I just feel I’m getting nowhere with my consultant and the team there. I’m not being difficult I just don’t think they are hearing me. I would love a different take on my MS and am wondering has anyone swopped to a different neurologist in a different hospital? TIA

adam88 · 14-11-2019 12:59AM

Carrie6OD wrote: »

Has anyone ever changed consultant? It took me ages to get into the public system after being originally diagnosed privately. I want to stay in the public system of course but I just feel I’m getting nowhere with my consultant and the team there. I’m not being difficult I just don’t think they are hearing me. I would love a different take on my MS and am wondering has anyone swopped to a different neurologist in a different hospital? TIA

I got my neuro cause she was the neuro on call the day I got diagnosed,,,,,, she has gone now and I’ve a new neuro,,,,, don’t even know if it’s male or female. What are you to expect from a neuro????

I just contact the ms nurses when I need a new script sent out

Carrie6OD · 14-11-2019 09:49PM

adam88 wrote: »

I got my neuro cause she was the neuro on call the day I got diagnosed,,,,,, she has gone now and I’ve a new neuro,,,,, don’t even know if it’s male or female. What are you to expect from a neuro????

I just contact the ms nurses when I need a new script sent out

I would like a Neurologist who listened to me

byhookorbycrook · 14-11-2019 10:00PM

Carrie6OD wrote: »

I would like a Neurologist who listened to me

I’m tremendously lucky in that regard . Our Neuro is super is why I drive 4.5 hours each way to her each month.

adam88 · 15-11-2019 12:34AM

byhookorbycrook wrote: »

I’m tremendously lucky in that regard . Our Neuro is super is why I drive 4.5 hours each way to her each month.

She based in the south???

Is there a reason why you attend so often ??

I haven’t been seen in over a year

Carrie6OD · 16-11-2019 11:46PM

byhookorbycrook wrote: »

I’m tremendously lucky in that regard . Our Neuro is super is why I drive 4.5 hours each way to her each month.

I would happily travel to a neuro if I was happy with them. Took me two hours travelling to mine last week and I was very unhappy with how I was treated.

tinofapples · 17-11-2019 12:45AM

byhookorbycrook wrote: »

I’m tremendously lucky in that regard . Our Neuro is super is why I drive 4.5 hours each way to her each month.

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

byhookorbycrook · 17-11-2019 07:47PM

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 · 18-11-2019 12:23PM

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 · 19-11-2019 11:36PM

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

Carrie6OD · 21-11-2019 12:07PM

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 · 21-11-2019 05:53PM

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 · 21-11-2019 05:54PM

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 · 21-11-2019 06:30PM

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 · 21-11-2019 08:16PM

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

Carrie6OD · 21-11-2019 08:58PM

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 · 21-11-2019 11:52PM

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 · 24-11-2019 09:02PM

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 · 03-12-2019 08:57PM

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 · 03-12-2019 09:15PM

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 · 03-12-2019 10:15PM

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

Nigel Fairservice · 03-12-2019 10:20PM

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 · 03-12-2019 11:08PM

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 · 05-12-2019 07:42PM

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 · 06-12-2019 11:36AM

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 · 09-12-2019 09:27PM

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

Lollipops23 · 11-12-2019 12:53PM

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 · 11-12-2019 06:59PM

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

MS in all its glory

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