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07-09-2011, 18:21   #16
youMS'er
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Quote:
Originally Posted by Val444
I definitely think that the more open about MS people are, the less terrifying it would be to be faced with it. I am not ashamed of it, and I am under enough stress as it is, without the extra tension caused by keeping secrets. I am gonna wait until my neurologist appointment next week, but after that, I think I will just be open about it.

My mammy also cried when I told her it was a possibility. And so I ended up comforting her, when it should have been the other way around. I think one of the emotions I am finding difficult is guilt. I know it is nonsensical, but I feel guilty for stressing Mammy out, guilty because this isn't what my fiance signed up for, guilty because I am going to be worrying a lot of people...

I am young, my symptoms are slight, I am reasonably healthy in every other regard, I work for a company who I know will do their best to accomodate me in the future, and as already mentioned, I am surrounded by amazing people in my life, and I am so grateful. It is not that I would wish it on anyone else, but I kinda don't get why it has to be me!

I might just need a bit of a slap, to be honest. I am making myself out to be an awful whinge on this thread, but I am really a very positive person, I swear!
All this sounds familiar to me Val been there, through it, the guilt is part of the process its 'natural' as are a lot of other things which you may or may not have to deal with emotionally either now or later on

As for telling the company or not, there is nothing to gain if you dont need to go into hospital for treatments and things like that. Obviously if the need arises then its better to be straight with them and fill them in, "I was in hospital because I have ms"
"we understand val..." ect

why tell them now??
 
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07-09-2011, 23:07   #17
dec7golf
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hi guys,

i have read the posts here and understand the uncertainty and fear, the what if's ?
my wife was diagnosed with ms a few months before we were married 13 years ago, we have had our ups and downs with ms, and its progressed from relapsing remitting to progressive and to a mobility scooter, with different treatments in between ..
it's difficult at times for sure but i have to say what a great 13 years.

we have two wonderful boys aged eight and one, my wife has a great positive attitude,I don't know how she copes so well. sure there are times that it gets to us, and some times when it gets to her that she does not share so as not to worry me (and vise versa) but there is so much that's good and we're really looking forward to the future.

take care and stay happy ..

d
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08-09-2011, 00:06   #18
Fighting Irish
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I was diagnosed in Sep 08, at that time i had vertigo(dixxyness when i leaned my head backwards) and blurred vision in one eye, i went into hos for 5 days to get IV steroids. I have been taking copaxone ever since, my last mri showed and increase of one more white dot on my brain. I'm doing fine at the moment, my balance is a little dodge but nothing i can't handle.

Anyone have CCSVI done?
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08-09-2011, 08:39   #19
LittlemsSkelly
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Hi FightingIrish,

I never have had the CCSVI done, and had pretty similar symptoms as yourself (vertigo,double vision,a very attractive nystagmus that's now gone, and three bouts of Optic Neuritis) so everyone has been very assuring that te prognosis will be good. Then I'll stumble across some medical journal article stating the horrors of MS, read it, freak myself out, and only then realise that its a bloody journal from either the 70's or 80's.... and treatments have advanced significantly from then so happy days!

I empathise 100% with the vertigo and dodgy balance, vertigo from the MS which is horrible and if one more person had come up to me during that period and said 'how have you vertigo, you're not up a ladder?' Seriously!!! Dodgy balance now is just because I have two left feet, if there's a button on the floor I'll trip over it!

Dec7, it is lovely to hear that you and your wife have done and are currently doing so well together and congratulations on your children. I was only discussing the issue of children with my boyfriend yesterday and brought up the possibility of a wheelchair, and he simply said (this is honestly not a macabre and depressing as it sounds) he could be in a car accident and end up in a wheelchair, I could fall down the stairs and the result be the same. So to spend time worrying about something which despite our best efforts may happen through illness, accident, or not at all is pointless. We're together 6 years and engaged to be engaged. When I first got sick I gave him one chance to bow out, and still be friends and he's still knocking about so its a testament to the fact that there are decent men in the world such as yourselves. He gets a bit over enthusiastic about wanting to inject me though....an entirely different meaning to 'playing doctor'

Val, dodgy emotions are normal. A local clinic wouldn't take my sharps box but told me if I was a long term narcotic user I could participate in a needle exchange, I got off the phone and sobbed. I mean hysterically sobbed, my boyfriend walked down and thought I'd hurt myself the way I was carrying on. Still haven't lived that one down.....

You aren't coming across as negative, you're coming across as frightened, and you're allowed to be. But there is nothing to be afraid of,just take one little obstacle at a time and you'll be fine. I'm completely honest and open about it, makes jokes etc. with friends and family but my boyfriends brother is the most inappropriate person I have ever met. With his entire extended family sitting around, folding paper for mass cards for a funeral,I managed to do one bogey and he shouts out 'Give her a break, she has MS. Hey, are you gonna stroke out on us? Ahahahaha'. I just walked off before I clocked him with my poor MS fist...
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08-09-2011, 09:47   #20
trishawisha
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Well done on this thread! I have had similar experience to many who have posted...even the disposing of sharps. I brought my full box to local health centre only to have someone come and take it, open the bag it was in and query it in the waiting room in front of maybe 10 people.
I wonder have many people joined the MS society? I did and nothing much has happened until I got a letter yesterday inviting Newly Diagnosed people to a seminar in October. This is happening in Cork City if anyone is interested.
Keep up the good work
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08-09-2011, 18:21   #21
gronemeyer
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Hi Longjohnn,

I got diagnosed with ms when I was 22 now pushing 27.

Took me a while to get around this whole thing. What I find helps if i'm stiff or loosing balance is bacalfen (as it I find relaxes the muscles), it also helps stop shakes or spasims if I anybody gets either when its cold or damp.

And what I can say to anybody who has been recently diagnosed and is thinking or feeling down because of it don't/try not let it beat you. At 22 I was on a walking stick and could barley walk 20 yards without needing a break (my first attack was quite bad I let it continue for weeks before I seen a doctor and after I did sink into a pit for months as people thought I only hurt my back because I was bottling stuff up, but when I was honest about it to people who didn't know I was shocked at how much support and help I got), since then i've learnt to walk 'freestyle' if you could call it that? I've done a lot of travelling and recently i've started playing contact sport again.

I do have plenty related problems still , but I try not let them beat me or dominate how and what I want to do in life.

You will have your low moments don't get me wrong(and i've had plenty and still do), just try keep as positive as possible.
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08-09-2011, 19:34   #22
byhookorbycrook
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Diagnosed in 2001, shortly after we married.Ironically I had won the teacher prize in the MS readathon the year before. Little did I think then I'd learn an awful lot more about MS in the years to follow.

I don't attend MS society meetings, would be afraid to meet people worse than me.

I started on Betaferon but skin reactions moved me to Avonex. I had two relapses in 3 months so was switched to Tysabri. I am now about 3 years on Tysabri and relapse free. We were all tested for the JC virus last month so are awaiting results.

So, you can look at what I've lost or what I have.

I used to ride and compete at one day events/showjumping etc. Now it takes two people to get me up( on the small fat cob I now have who has the pateince of a saint) and I can only walk, trot and canter.

I used to train a football team and go to matches in Croke park, both no longer possible.

Now, I have a wonderful husband, good friends always willing to rally round,a straight talking gp and neurologist-both excellent.
(Can't bear wafflers esp when it comes to my health)
I can drive and I work.

So, it's glass half full/empty.

From day 1 I have made no secret of my MS.I am not ashamed and I don't want pity,but I do want a little understanding.

The very best of luck to everyone who has posted here. Stay well.
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09-09-2011, 21:50   #23
 
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Quote:
Originally Posted by gronemeyer View Post
Hi Longjohnn,

I got diagnosed with ms when I was 22 now pushing 27.

Took me a while to get around this whole thing. What I find helps if i'm stiff or loosing balance is bacalfen (as it I find relaxes the muscles), it also helps stop shakes or spasims if I anybody gets either when its cold or damp.

And what I can say to anybody who has been recently diagnosed and is thinking or feeling down because of it don't/try not let it beat you. At 22 I was on a walking stick and could barley walk 20 yards without needing a break (my first attack was quite bad I let it continue for weeks before I seen a doctor and after I did sink into a pit for months as people thought I only hurt my back because I was bottling stuff up, but when I was honest about it to people who didn't know I was shocked at how much support and help I got), since then i've learnt to walk 'freestyle' if you could call it that? I've done a lot of travelling and recently i've started playing contact sport again.

I do have plenty related problems still , but I try not let them beat me or dominate how and what I want to do in life.

You will have your low moments don't get me wrong(and i've had plenty and still do), just try keep as positive as possible.
Thanks gronemeyer
I'll remember that drug as I do get shakes in the legs in the mornings but they are not bad and I am used to them. You are right you have to keep positive and I am, I'm just a bit pissed off over how hard it is to get treatment.
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09-09-2011, 22:02   #24
 
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Quote:
Originally Posted by Fighting Irish View Post
I was diagnosed in Sep 08, at that time i had vertigo(dixxyness when i leaned my head backwards) and blurred vision in one eye, i went into hos for 5 days to get IV steroids. I have been taking copaxone ever since, my last mri showed and increase of one more white dot on my brain. I'm doing fine at the moment, my balance is a little dodge but nothing i can't handle.

Anyone have CCSVI done?
I had it done last Janurary in Poland with high hopes but it did nothing for me.I knew before I went that it might not help but my opinion was that if I didn't try it I would never know. Seems to have worked for loads though.
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10-09-2011, 15:47   #25
byhookorbycrook
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Bit of light relief. My mother is always coming up with "cures" ,some from ICA friends and some from various newspapers and god knows where else.

So far she tells me I will be cured if I try any of the following:
  • goat serum
  • allow myself to be stung all over by bees once a week
  • a certain "faith" healer
  • swim with dolphins
  • drink water for a particular holy well.

Anyone have any more??
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10-09-2011, 21:48   #26
 
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Quote:
Originally Posted by LittlemsSkelly View Post
Hi all,
I can PM you the names of the 3 neurologists I have seen ( 1 private,2 public ) and I can honestly say, the level of competency and professionalism I received from each has been outstanding.

Hi LittlemsSkelly

God you have got it rough for a young person I hope you keep well. I would appreciate very much if you PMed me those names although I have a couple of names already.
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18-09-2011, 18:21   #27
 
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I have another bad experience to share with you all. Two weeks ago my drivers licence was up for renewal and of course being honest I declared that I had MS. This required my GP to fill in a form which he did and someone picked it up for me. When I got the form back I noticed the only box in the licence classes on the form that he ticked was the car and for 1 year. I have a lorry and a coach licence so I assumed he had made a mistake in filling it because he had not discussed it with me so I crossed out his tick and put a tick in the lorry & coach classes and for 10 years.
Two days later I needed to ring the local Motor Tax office to ask for a receipt and they told me there would be a slight delay because they had to contact my GP.
A few days later the new licence came back and guess what it was for 1 year and for the car only. Ok I can live with having to renew it every year but losing the lorry and coach that I worked hard to earn I can't. Talk about kicking a man when he's down. There is absolutely wrong with my driving and even if there wasmy gp wouldnt know about it because he never asked, also I drive an automatic because my problem is with my left leg not my right.
I'm so annoyed I haven't spoken to the Gp yet but I intend to and at this rate of going he will soon be my X GP.
Has anybody had an similar experience.
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18-09-2011, 18:42   #28
byhookorbycrook
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Got mine for 3 yrs, but I only drive a car. LongJohn, have you informerd your insurer you have MS?I get a letter each year from my neuro to say I'm fit to drive and always send it in. Maybe your neuro might be better placed to say whether you can drive lorries etc. than your gp?
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18-09-2011, 18:47   #29
 
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I was diagnosed last Oct, and recently had to renew my licence and insurance. The insurance company refused a letter from my GP and would only accept a letter from my Neuro. Loads of hassle as my GP is great, and the Neuro seems to be on holiday every time I need her!!! At least I know for next year.
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18-09-2011, 18:55   #30
byhookorbycrook
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I was one company who sent me a 16 pg highly personal and invasive form,the week before I was due to renew,so changed of course.
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