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Sister diagnosed with MS - positive stories please :(

(18 Posts)
DaisySteiner Thu 17-Mar-11 12:05:27

Feel a bit in shock, dsis has just received an unofficial diagnosis of MS and is waiting for confirmation from MRI, lumbar puncture etc. She had a period of numbness about 4 years ago, with nothing showing up on MRI and it resolved itself. At xmas she developed severe optic neuritis which she still hasn't recovered from, which led to a neurology appt and an unofficial diagnosis of MS last week. Around this time she also developed numbness in one leg and she's complained of fatigue since xmas too.

It would just be good to hear some positive stories - we're worried about it generally, but particularly as she's not recovered her sight and other symptoms seem to be appearing. sad

strawberrybonbon Thu 17-Mar-11 12:50:04

Poor you, no wonder you feel in shock. You are doing exactly the right thing though, looking for positive stories. It really does help to keep as positive an attitude as possible to deal with MS. My OH was diagnosed last year and we are still learning about the condition. He has good days and some days are not so easy. It can be unpredictable in that way.

However, the good news is that there are drugs to help with some of the symptoms and my OH has recently started rebif treatment, which is meant to reduce relapses by a third.

My best advice is to take one day at a time. Try to stay as upbeat as possible. Hopefully, your sister will be assigned a dedicated MS Nurse. We have found our MS Nurse to be extremely supportive and informative. She is our first point of contact and will let my OH know if he needs to see a GP or whether his current symptoms are merely a 'blip'.

I spent a lot of time finding out about MS online, but with this condition, everyone is affected differently so there are no hard and fast rules. Each relapse is different too. Sometimes symptoms come and go quickly. Other times they seem to hang around a bit longer.

Good luck, I'm sure your sister really appreciates all the support that you are giving her.

caroline345 Thu 17-Mar-11 13:39:45

Just a quick one-but a positive message! My father was diagonised aged 21 at medical school, took a year out to get over the initial symptoms and now nearly 40 years later has had three children a successful career as a doctor and only twice where he has had to take 6 months off work, so all in all, yes it has affected his life but not that much. I know everyone is different but whos to say your sister wont be the same as my dad.

smee Thu 17-Mar-11 20:32:02

SinL was diagnosed in her late twenties, now in her sixties and still walking and cycling. Her mobility's far from perfect, but that's really only been a problem over the last five years and she's still very much living a full life. I know everyone is different, but hope your sister is similar. smile

DaisySteiner Thu 17-Mar-11 21:05:14

Thanks for all the stories. It's heartening to hear them. smile Dsis is fairly positive (I'd be a wreck!) and has a colleague who has had MS for a number of years and is doing well. She's got an emergency appt at the MS clinic tomorrow so hopefully we'll get some more information she'll be given lots of support to come to terms with it.

Chaotica Thu 17-Mar-11 21:35:24

I don't want to add false hope, but I have had all of those symptoms and still nothing showed up the MRI.

whomovedmychocolate Thu 17-Mar-11 21:55:10

DH's (female) friend has it, and was diagnosed over 25 years ago. She has good days and bad days. In the bad days she can't walk at all, but it's mostly good days. And there are a lot of studies showing promise for some kinds of MS. There is a future out there.

Milliways Fri 18-Mar-11 18:33:51

This is a helpful forum too - has lots of other people in "Limbo land" awaiting results etc.

Greenwing Fri 18-Mar-11 19:12:32

My friend was diagnosed with MS in her late 30s, 24 years ago. Her balance has been a problem so she used a stick, and now a walker to make sure she doesn't lose balance and hurt herself. One side worse affected than the other. She did have to retire early but can still walk and drive and enjoys a good quality of life in her 60s.
Good luck to your sister.

Stropzilla Fri 18-Mar-11 19:27:18

Another positive message here too, my stepmum was diagnosed in her 40s, she'd had it since her 30s. She's 60 now, going on cruises and all sorts. She has retired, and has "wobbly" days but is generally ok! She's got a bit of a memory problem but still drives just fine. Mostly you wouldn't know there's anything wrong, so best of luck to your sister.

DaisySteiner Fri 18-Mar-11 20:42:07

Thanks for all of these, will pass them on.

She had her appt today and the doctor she saw is concerned that because the optic neuritis has not really improved that she may have the progressive form sad The first neurologist she saw otoh had said that it was likely to be 'mild MS' so we're a bit confused and hoping that the MRI and LP will shed some light on things.

Thanks again.

hardhatdonned Fri 18-Mar-11 21:35:24

The news and prognosis will entirely depend on what type she has.

My uncle has primary progressive, diagnosed 30 years ago and, although severely disabled, is still 'him' iyswim. Think he started displaying symptoms at 19 or so and was in his 20's when he finally got the diagnosis.

If you have any questions at all please feel free to PM me and i'll try and help. I've sadly had to watch the progress of the whole illness from childhood until now

crystalglasses Fri 18-Mar-11 21:46:40

My ds was diagnosed in 1981, when she was 31. She had optic neuritis, numbness and numb patches in one arm and both legs, couldn't walk more than a a yard or so, very frightened. Was diagnosed with MS after lumber puncture. Jump forward to today - she has had 2 children, got a university degree, held down a job for years, goes to the fym regularly (3 times a week) no symptoms apart from some numbness now and agina. The way she deals with it is to make susre she doesn't get overtired because it makes her 'wobbly' if she is. So she always has a nap for an hour or so whenever she needs it and takes time off work if she feels tired; sits down in the supermarket if she needs to etc.

My sister is a good news story and although not all people with MS have such good fortune there are more people with the condition out there than you might think.

shitmagnet Sat 19-Mar-11 06:28:33

Message withdrawn at poster's request.

mandalish Wed 30-Mar-11 17:58:14

I was told I was very high risk of getting MS almost 7 years ago when I was 26 years old. I had a very mild attack on the left side of my face with tingling, along with fatigue, followed by an MRI showing several lesions. I have been taking Avonex since and the only problem that I have had was recently being diagnosed with hypothyroidism because of the long term use of Avonex (which can be easily controlled). I also get nasty side effects from the Avonex, but at the end of the day I am healthy. In the beginning few years I was scared and had a lot of anxiety & counselling to help me get over the fear of not knowing. At the same time, I have completed a university degree, my teaching degree, lived in New Zealand for a year, travelled quite a bit, got married and stay very active. I realize that I am very lucky and this doesn't happen for everyone, but I thought it was important to share because when things can start out shit*y, it may not always stay that way. Seven years ago was the worst time in my life. I was told I had a 90% chance of having another attack in the following 2-10 years and it has already been 7 and I have had nothing. I go for regular checkups, blood tests, I eat a vegetarian/low fat diet & I exercise regularily and keep my body low in fat and as strong as I can.

I hope this helps

CatherineUC Fri 09-Nov-12 17:23:38

Hey everyone, I have just been diagnosed with MS after waking up with stroke-like symptoms in May. Tingly arm, slurred speech, weakness in right hand etc. I go to the gym every day and ran a half marathon 3 weeks ago. To say I am frightened is an understatement but these positive stories really help. Thanks! I had an MRI in June and a neurologist told me I had a few inflammations and it is likely to be MS. Then I had another one and he told me it looked better and it might have been a one-off attack. Then today when I saw the specialist he said he'd looked at that scan and saw an inflammation (which I'm not sure if it was one the other doc had seen or not) and he said he could say it's MS without a second attack. So now I'm going to try a clinical trial. I hope my story is as positive as these. Thanks again!

Nesswalk Fri 09-Nov-12 18:31:00

Hey folks
I was diagnosed 7 years ago at age 23, like yourself Catherine I developed stroke like symptoms. It is a really frightening time when your first diagnosed but with support from friends family and MS nurse you get there. I've generally had about two relapses a year since varying from optical neuritis, numbness down legs, weakness in legs and arms, fatigue is an ongoing problem. More recently I've had both my hips replaced this year due to a rare side effect of the strong steroids I took when relapsing. But now back to normal and feeling great.

I definately believe a positive attitude helps, and allowing people to help [as difficult as it can be to admit you need the help]. I've been able to remain working as a nurse, got married in April and now hoping to start trying for a family in a couple of months.

Catherine feel free to PM if you like, I know it can seem lonely but there really are others going through what you are.


girlsyearapart Fri 09-Nov-12 19:49:09

Another MS 'sufferer' here.

Initial tentative diagnosis aged 21 after optic neuritis.

Official diagnosis aged 25 when I had it again and numbness and clawing of right hand.

I am now 33 have four kids under 5, am a qualified primary school teacher, exercise regularly and do my best to ignore the fact there is anything 'wrong' with me.

I have also been on avonex injections and will be re starting soon as had to stop to bf ds.

There are good days and bad but your sister sounds like she is coping ok & has strong family support which is invaluable.
Happy to answer pms if anyone wants

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