Any Irish MS groups?

LegacyUser

Hi,

Another topic got me thinking about this. I cannot get involved in any of the main MS discussion groups, I find them as someone else mentioned 'doom and gloom'. Is there any Irish ones around, or is anyone interested in starting one, even a thread?

thanks

Why not have this as a discussion thread? Or you could request a living with MS forum. 7000 people and families affected in the country. I imagine it would have an audience.


Have you seen.

http://www.ms-people.com/forum/index.php

LegacyUser

Thanks for the link. I suppose I don't like those larger type sites, as you can just read far too much, and I like to remain slightly in denial at times. Maybe not denial, but I like to forget I suppose..

byhookorbycrook

I was advised early in my illness to avoid groups as many there would be worse than yourself and it could be very depressing.

Peggypeg

Yeah I completely agree with all of the above. Nearly all of the MS websites would have you slitting your wrists after a while. They're not very upbeat at all, in fact they read more like a "so your life is over" website. Also I really question the usefulness of reading about other people's symtoms, MS is a disease of your nevous system and so effects anything controlled by your nervous system so in effect it can affect absolutely everything!! I don't really see how reading about other people's symtoms can be anything but depressing. The chances of you having the same symtoms as someone else are remote, like i've had arms not working, legs not working, tingling and believe it or not my least favourite systom - itching (on my face and neck), but another person may have completely different symtoms. Also take the symtoms I've mentioned, now you get a newly dianosed MS person and they look up one of those websites and see those symtoms, they may have had legs not working and so assume they'll get the other symtoms described, in effect they'll be dreading something that might never happen. By all means take support from anyone who offers it but avoid the doom and gloom if you can. I'd like to see someone like me as the face of MS, granted I'm biased but I think I'm brilliant, I've don't let this get me down, I work full time, I'm getting a degree part time, I simply don't have the time for all my hobbies and pastimes and I have friends coming out of my ears. I think it's time for the face of MS to change, granted it's a pain in the *ss (especially on injections days ) but it's not the end of the world anymore. I don't want people to look at me with pity, I want people to look at me with admiration, for getting on with it and not letting it get me down. I think the more people that come forward and say "I've MS and I'm doing great" the more people will realise that MS isn't the end of the world. And a knock on effect of that will be that people who are newly diagnosed won't be terrified, yeah that's what I think, MS needs a more positve face.

CathyMoran

I agree to a certain extent - having said that here and a few other places are good...I do not have MS but am a type 1 diabetic and am an oesophageal cancer survivor and found that one "oesophageal cancer group" was getting me depressed, someone was dying every day and they got annoyed with me when I was getting on with my life - having said that, they did send me a daily mail with every discussion...the ones where you can pick and choose what you look at are better but still not great.

I did and do not want to be defined by my illnesses, when I am on treatment I do not want to have every symptom...(sorry, mini-rant).

byhookorbycrook

French23, I agree totally, I did a programme on MS a few years back on RTE just to show life goes on. Just in from riding my horse

Peggypeg

Good for you byhookorbycrook!!!, I love to hear of other people with MS doing well.

LegacyUser

That is so great to hear all of your experiences. I like you, don't 'suffer' from MS. I even rang the hospital a couple of months back for a second scan because I was convinced they made a mistake. I have loads of energy, and I can party like no one else in the family, but I was afraid to jinx myself by openly admitting it on a forum (especially the ones who just love to chat about what future wheel chair they might get).

The only thing that really scares me is having a relapse of the symptom I got when diagnosed. It was a symptom the doctors had never come across (typical of me), and when I think of that is makes my heart go in my mouth.

My memory seems a bit shabby, but nothing major after that at the moment.

*I just did my injection typing this post..haha. I am on Betaferon, was using the gun, but ended up with massive bruises everywhere, so now I am just injecting with the syringe and find it great. I also have a 'sore side', my left used to really hurt when injecting to the point of me actually screaming 'Fu&#' when the nurse brought out a new type gun and shot me with it.

byhookorbycrook

Unregistered wrote: »

My memory seems a bit shabby, but nothing major after that at the moment.

*I just did my injection typing this post..haha. I am on Betaferon, was using the gun, but ended up with massive bruises everywhere, so now I am just injecting with the syringe and find it great. I also have a 'sore side', my left used to really hurt when injecting to the point of me actually screaming 'Fu&#' when the nurse brought out a new type gun and shot me with it.

try omega oils for your memory, I use Udo's choice, before you inject,put an ice cube in a clean freezer bag and keep it on the site for a few mins, try arnica for the bruises. I used to take betaferon, my husband got some funny looks on the beach where all my bruises were on show.:D

shazba

Hi all i have M.S and i am on Tysabri now have 11 sessions with it and feel great .was on Rebif before but not for me but this stuff is fab. Would love to speak to others in ireland with M.S .I am in my 40's My oldest is expecting our 1st grandchild and life is good, I look forward to Everyday and know life is what you make it, so make the best of it M.S is not a death sentance just a new path in life You might enjoy some of it so until you try you wont know!!!
Onwards and upwards with optimism

Peggypeg

Well I have to say I like this thread very much, what a change to hear "I have MS too and I'm grand". Very refreshing. I sometimes wonder too if my MS has actually gone away and I don't know it but I had a talk with my Doctor and he said it basically doesn't happen, well it does with Beneign MS but if you've had more than one flare up it isn't benign. I don't think it goes away but if in doubt ask to get it checked. Also I know what you mean about worrying about certain symtoms, my worst was itching. I know it doesn't sound that bad but it was bloody awful, still though, I haven't had it since I started meds so I say don't torture yourself by worrying about it - it might never happen (again). Also I know what you mean about the bruises, I do fire performing with a fire hula hoop and sometimes when my top rides up people are like "oh you're after burning yourself" and I always get funny looks when I say "I'm too good to burn myself, those are injection sites". I can be a bit evil like that. Anyway big hugs to one and all, it's fab to find somewhere were I pat myself on the back and say "look at me, I'm doing great", instead of feeling like I should be depressed.

LegacyUser

Great to hear all such positive posts. French I was the same as you, ringing the hospital for another scan, just so they could check 'in case they had it wrong'.

I am going to register over the weekend and join up for good.

rosepetal

Great to hear such positive stories!!!! Love this thread:D

hyperone

Hi there,

I would be interested in this. No doom and gloom. I am symptom free and I plan to stay this way . Let's inject some positivity We could call ourselves "The Positive Bloomers!! I welcome anyone's thoughts and suggestions

FluffyCat

Well I have MS and although I hate it Im 2 and bit years symtom free with no real problems. No one outside my my immediate family knows and I agree that most websites just show the worse case and not the reality for most people! I would welcome a upbeat discussion!

bnt

I took a look at some of those forums, and found it a bit scary, especially the lists of medications people are on. I've was on the FTY720 Phase III trial (TRANSFORMS) for 2 years, and now in extension phase. I'm taking that, vitamin D, cod liver oil and other general supplements, and that's it.

Apart from that, I'm another relative success story: after diagnosis in early 2006, I had one relapse in 2007, and nothing else major. I do have various minor neurological symptoms, but they don't really get in my way, except that I suspect that my memory is being affected. I'm at university now (3rd year as a mature student), so a good memory would be useful ... I think. :cool:

Lone Stone

Hi if any of you do set up a group or a forum even it would be great ive been trying to find one for my mother to chat on but like you all say its full of dooooom and glooom , she gets depressed when she see's the groups out there and i think it would be good to find a place with a positive outlook she is in her late 40's. Anyway il keep an eye on this goodluck.

shazba

Hi all, Just to let ye know just back from spain,Had a great holidayand feel great .Heat didnt effect me, And although family members worried about megetting Swine Flu while i was out there i'm home 7 days todayand symptom free. so onwardsand upwards folks!!!!:)

hyperone

Hi all,

[FONT=&quot]Just thought to mention there is a fascinating ground breaking film called The Living Matrix on the 5th of November. This is taken from the website “In this full-length film The Living Matrix - The Science of Healing we bring you breakthroughs that will transform your understanding of how to get well and stay well”. [/FONT]This is a great opportunity to see this ground breaking film on our individual powers of self healing.

If you go, go with an open mind Check it out.

Fighting Irish

Can MS affect your speech?
As in, you're a little nervous for whatever reason and you're talking away and you get stuck on a word and you can't think of the word for ages. You know what you're talking about but you just can't get the word out

Example:
I'm going down to the shop to get bread and a packet of ___(and here we go, 10 second break because i can't think of the word i need )____ tayto!!!!!

I seem to do this a lot but not sure if its MS related
Diagnosed with MS last year but feeling great, except for college being back and having to start getting up at 9am again :pac:

shazba

The same thing happens me. Not sure if its M.S related or old age setting in but its best ask your neuro

Fighting Irish

shazba wrote: »

The same thing happens me. Not sure if its M.S related or old age setting in but its best ask your neuro

I will and its not really a problem, just something i've noticed. Not seeing my neuro until Dec so i'll keep on wondering until then

byhookorbycrook

Fighting Irish, cognative problems can appear with MS,eg getting stuck for words etc. I was in an awful flap about forgetting things, until my 6 gal pals all admitted to the same thing,so it's an age thing too!

Fighting Irish

byhookorbycrook wrote: »

Fighting Irish, cognative problems can appear with MS,eg getting stuck for words etc. I was in an awful flap about forgetting things, until my 6 gal pals all admitted to the same thing,so it's an age thing too!

I'm 25 so i dunno if its an age thing for me yet, i presume there's no sure way for knowing? I doubt even the neuro could give me a defo answer

byhookorbycrook

I discussed thsi with my neuro and she did some tests(verbal ) so might be worth talking to your own neuro.