MS in all its glory

ash23

outnumbered82 wrote: »

I have my second out patients appointment this week. I dont know what to ask. Nothing major has happened just the usual tiredness, numb leg, eye pain but none of which lasted to long or seemed bad. I don't want to go wait 2hrs to see someone 10 minutes to come away with nothing. What are the usual questions you should ask?

I've my 2nd appointment in July. All I want to know is if they think the meds are working and how long do we leave it before we decide that they are/are not.

I started in Dec and was mid relapse and have had another relapse (optic neuritis for the last 7 weeks) so that's all I want to know. How can we tell they are working and how long do we leave it before we consider a change to something else.

ElleEm

Any of you lovely Boardsies heading to this?

http://www.ms-society.ie/pages/what-we-do/world-ms-day/world-ms-day-youth-event-2013

ash23

ElleEm wrote: »

Any of you lovely Boardsies heading to this?

http://www.ms-society.ie/pages/what-we-do/world-ms-day/world-ms-day-youth-event-2013

I was but then realised I'm going on holidays the same day :rolleyes:
Typical!

ElleEm

ash23 wrote: »

I was but then realised I'm going on holidays the same day :rolleyes:
Typical!

Holiday totally trumps MS event!
I'm going with another MSer I met on Boards!

ash23

I'm meeting another MS'er this week I think. Her child is in my childs class and the two kids got chatting and discovered both their mammys have MS.

ElleEm

ash23 wrote: »

I'm meeting another MS'er this week I think. Her child is in my childs class and the two kids got chatting and discovered both their mammys have MS.

Aw, that's so lovely. There is really nothing like having a face- to- face rant with a fellow MSer, nobody gets it but us!

ash23

Plus it's good for the kids to know they aren't the only ones either. When they found out they had a great chat about how tired their moms always are and about how we both always say the same thing which is "I'm not in the mood" when they ask us to play/act up/look for us to do something.
(although I'm not sure that's the MS as much as it is the daily grind of putting up with pre-teens!)

discobeaker

Dont think i posted this up. Has anyone been to these meetings?
http://www.meetup.com/Dublin-Multiple-Sclerosis-Group/

I was at the one last month and it was great. Its run by Emma Rogan who works with the MS Society i believe. Also,up in the MS centre in Terenure they are running Yoga on Wednesdays or Thursdays and Physio is friday mornings. I plan on heading to the yoga on Wednesday.

Has anyone tried Yoga to help with the MS???

outnumbered82

Had my appointment on Wednesday have 2 new lesions On my brain MRI from my last one. Does anyone know how many lesions they have or the difference between scans. All in all they are happy with few changes were made but nothing to different.

ash23

Discobeaker, I keep meaning to try and get to an MS society meeting in my area but they're all during weekdays and I work fulltime so the times don't suit.

Outnumbered, I have only had one brain and spine MRI, taken back in September last year. I had two lesions on my spine and a speck of one on my brain.
I don't know when I'll get another MRI. I have my first repeat neuro appointment in July.

ANXIOUS

Outnumbered82 my limited understanding of ms leads me to believe that it's generally not how many lesions you have rather where they appear. So you could have 50 and nothing or you could have one in a vital location and have it affect you.

discobeaker

Hey Ash23

The meetings that Emma runs are on a saturday,usually from 2.30 till 4 or so.
Its just a coffee and a chat in the IFI. Its usually 1 meeting a month. Not sure when the next one is but if you sign up to that meet up link i posted then it will send you an email everytime there is a meet up planned

Did my first yoga session in the MS centre in Terenure on wednesday morning,my god..... muscles that have lay dormant in me for years finally got used

Its 50 euro for either 8 or 10 sessions so its really cheap

tatumkelly

Where are the classes in Terenure? Do you need to prebook?

I'm quite fit, and keep very active but find stiffness creeps up on me very easily so wouldn't mind giving it a go....

discobeaker

Its in the MS centre. 65 Bushy Park Road. They do physio on a fridays aswell i think but i havent been to that.

I just showed up to the yoga on wednesday and signed up after i took the class.
Someone told me its called "Chair Yoga" so you do it all sitting down or if your in a wheelchair you can still do it. I think it was about 1 hour 15 mins for the class.
I enjoyed it and the lady doing it was lovely.

Its not on next week due to it being a bank holiday but its on the following wednesday at 11AM. It might also be on a thursday afternoon/evening too but i'm not too sure of that

sadie06

A very interesting article here for anyone suffering from brain fog and fatigue.

http://www.guardian.co.uk/lifeandstyle/2013/may/03/brain-enhancing-drugs-mj-hyland

Knocknarea

http://www.ms-society.ie/pages/what-we-do/world-ms-day/world-ms-day-youth-event-2013


This looks like a very good event being run by MS Ireland next weekend. I am going to travel up from the "west" for the weekend.

As my diagnosis is relatively new, I reckon some positive stories is what I need to hear

ElleEm

Knocknarea wrote: »

http://www.ms-society.ie/pages/what-we-do/world-ms-day/world-ms-day-youth-event-2013


This looks like a very good event being run by MS Ireland next weekend. I am going to travel up from the "west" for the weekend.

As my diagnosis is relatively new, I reckon some positive stories is what I need to hear

I'll be there, and I'm mad positive :P

ash23

discobeaker wrote: »

Hey Ash23

The meetings that Emma runs are on a saturday,usually from 2.30 till 4 or so.
Its just a coffee and a chat in the IFI. Its usually 1 meeting a month. Not sure when the next one is but if you sign up to that meet up link i posted then it will send you an email everytime there is a meet up planned

Did my first yoga session in the MS centre in Terenure on wednesday morning,my god..... muscles that have lay dormant in me for years finally got used

Its 50 euro for either 8 or 10 sessions so its really cheap

Should have specified that I'm in the west. Afaik the meetings down here are weekdays. But thanks

discobeaker

Knocknarea wrote: »

http://www.ms-society.ie/pages/what-we-do/world-ms-day/world-ms-day-youth-event-2013


This looks like a very good event being run by MS Ireland next weekend. I am going to travel up from the "west" for the weekend.

As my diagnosis is relatively new, I reckon some positive stories is what I need to hear

Im diagnosed 7 months now so its still new to me and im still learning about it all but if you do come along then you know that afew boardies will be there

discobeaker

ash23 wrote: »

Should have specified that I'm in the west. Afaik the meetings down here are weekdays. But thanks

Haha.... I should have properly read what you wrote and paid attention to the "in my area bit" My bad

Knocknarea

ElleEm wrote: »

I'll be there, and I'm mad positive :P

Mad positive I like that

kkelly77

Knocknarea wrote: »

http://www.ms-society.ie/pages/what-we-do/world-ms-day/world-ms-day-youth-event-2013


This looks like a very good event being run by MS Ireland next weekend. I am going to travel up from the "west" for the weekend.

As my diagnosis is relatively new, I reckon some positive stories is what I need to hear

I missed the MS Day Youth event that took place.

I was wondering if there is any media available from the event day e.g. video recordings of talks/presentations given or information regarding training, employment, benefits etc?

discobeaker

kkelly77 wrote: »

I missed the MS Day Youth event that took place.

I was wondering if there is any media available from the event day e.g. video recordings of talks/presentations given or information regarding training, employment, benefits etc?

I was at that day in the davenport hotel. I believe it was all recorded by Emma from the MS society so maybe she would be the best person to talk to. Conor Devine's talk was also recorded so you could maybe even message him on Twitter and ask about his talk.

There was 1 speaker who talked about employment/benifits,cant remember her name but maybe call the MS centre and they can tell you her name.

Hope that helps

kkelly77

discobeaker wrote: »

I was at that day in the davenport hotel. I believe it was all recorded by Emma from the MS society so maybe she would be the best person to talk to. Conor Devine's talk was also recorded so you could maybe even message him on Twitter and ask about his talk.

There was 1 speaker who talked about employment/benifits,cant remember her name but maybe call the MS centre and they can tell you her name.

Hope that helps

Thanks for that discobeaker.

I've emailed the MS Society but haven't had a reply.

discobeaker

I would say maybe give them a call or if your in the area,pop into them or even go to one of the Meet Ups that Emma and Raymond hold in the IFI once a month (the next one hasnt been announced yet) but you could speak to Emma herself at it and she might be able to help you out.

ash23

Hi all,
How is everyone finding the heat?

In one way I feel much better, in great form and way more energy. But I'm having a bit of pain in my arms and hands and a small tremor in my thumb. I'm finding I'm very clumsy and dropping things, not being able to get the keys in the door etc.
Just happens on and off so I don't think it's a relapse, more just a reaction to over heating.

byhookorbycrook

Yes, heat can make you feel worse with MS, it's not likely to be a relapse if it improves again when you cool down.
Some good things happening with research:http://mayoresearch.mayo.edu/mayo/research/rodriguez_lab/remyelination_update.cfm
http://news.sky.com/story/1099859/multiple-sclerosis-ms-treatment-breakthrough

Is anyone else here on Tysabri?

MS.ing

byhookorbycrook wrote: »

Is anyone else here on Tysabri?

I am

byhookorbycrook

How are you finding it ?Are you Jc+ ? How long are you on it?
Been on it since Jan 2009 and no relapses.Am Jc+ so am hoping to switch to Campath when it comes out.

outnumbered82

Hope everyone is enjoying the nice weather. Does anyone notice that there injection sites are more sensitive to the sun? Was sunbathing over weekend had factor 20 on and noticed red circles on the top of my leg not burn but just red circles then remembered that was where I injected. Does anyone else get that?