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Possible MS - any positive/encouraging words?

(21 Posts)
BottomlyPottsWithoutTheSpots Tue 15-Sep-15 07:34:27

I'm feeling pretty scared and desolate. Can someone please tell me this is not the end of meaningful life, and doesn't mean my kids will not have a decent mother any more?

CoteDAzur Tue 15-Sep-15 07:55:52

I'm sorry you're worried you might have MS. My friend who has been diagnosed over 20 years ago is still independent and has a very active and meaningful life. These days medication is very good in the management of MS. It's really not all doom and gloom. Good luck.

Kampeki Tue 15-Sep-15 08:00:07

I came on to say similar - my friend was diagnosed over 20 years ago and still leads a very full and normal life - she goes through phases where the symptoms are worse, but most of the time, she is fine.

BottomlyPottsWithoutTheSpots Tue 15-Sep-15 08:04:12

Thank you both so much. I have't slept, and am slightly pathetically weeping at your kind responses.

NationMcKinley Tue 15-Sep-15 08:06:21

I have 3 friends with MS: two working FT in active, professional careers (NHS) and one SAHM. All are well with minimal symptoms. Best of luck flowers

BottomlyPottsWithoutTheSpots Tue 15-Sep-15 08:11:51

Thank you, Nation. So glad to hear your friends are doing so well.

BottomlyPottsWithoutTheSpots Tue 15-Sep-15 08:13:22

Do you know whether they took a while to adjust to the diagnosis, or were they able to stay positive from the start?

SmokingGun Tue 15-Sep-15 08:17:31

My DM has MS, was dx 8 years ago. Nothing at all has changed with us, other than sometimes I have to help her out a bit more. You will have lots of ups and lots of downs but that's normal.

I hope you have a supportive family around you flowers

OldBeanbagz Tue 15-Sep-15 08:17:59

I have two friends with MS. One was diagnosed 20+ years ago, the other 10+ years ago.

Both of them still very active and working full time (one has his own business). The younger of the two you'd never guess he had it. He's such a gym guy who's always posting FB photos of his latest power smoothie.

It's not the end of meaningful life, it's just a different path through it.

florenceandermintrude Tue 15-Sep-15 08:43:18

I was diagnosed 10 years ago, the only continuing symptom is fatigue. This is managed by just pacing myself and being aware what is particularly tiring.

The occasional relapses have been relatively minor and short duration with full recovery each time. To be honest I don't now really think of myself as having MS. Everyone is different - I hope you have an easy ride with it.

comeagainforbigfudge Tue 15-Sep-15 09:00:55

flowers

I have MS. Diagnosed 2 years ago. The waiting is the worst part I think. I burst into tears (once I left Dr's office mind you) after I was officially told. Part relief of knowing finally what was wrong, part OH MY FUCKING GOD IT'S MS.

BUT it is what it is. I had to just get on with it. I work with very very sick people waiting on transplants. So that helps me when I'm really overthinking it. Oh and don't go on the forums it was full of people at their worst moments when I did that. Remember a lot of those who use certain forums only reach out when they suffering a relapse/feeling low. So it can be skewed. There are many many people who have MS that day to day are living a normal full life.

The only concession to MS Ive made was to drop one shift. (Nhs worker so dropped from 13 shifts to 12. Made such a difference as was exhausted)

However I've recently had a baby. Life goes on and I refuse to let MS rule mine. <<stubborn>>

Is your appointment today? Is that why you didn't sleep?

DipsoHippo Tue 15-Sep-15 09:10:51

I have MS, diagnosed 5 years ago

Life pretty much goes on as normal. Fatigue gets me quite a bit, and I do have some symptoms in my arms and legs, but if you passed me on the street you'd never know.

After my diagnosis I found out that a LOT of people have it, and get on with their day-to-day stuff. In the media, you tend to see/hear about the more serious cases. It was a relief to find out that not everyone has the same experiences.

Happy to chat to you if you ever want to PM me flowers

BottomlyPottsWithoutTheSpots Tue 15-Sep-15 09:23:42

Thank you all very, very much for replying. I'm sorry you've all experienced this, but really pleased to hear how life has been continuing meaningfully.

I'm awaiting my appointment letter for full investigations but the symptoms all add up.

Kampeki Tue 15-Sep-15 09:49:56

OP, my friend took it very badly in the beginning. We were both at university, and we should have felt that life was stretching out in front of us, whereas she suddenly felt it was all over. She imagined all of the worst possible case scenarios. However, the more she learnt about MS, the more she understood that it takes many different forms, and she realised that many, many people with MS do lead active and fulfilling lives.

These days, 22 years after the initial diagnosis, she has a very interesting and high powered job and a rather busy social life. She regards the MS as a bit of a PITA, but it doesn't really stop her from doing stuff.

Of course the diagnosis is a horrible shock for you, and it will probably take a while to adjust, but please don't assume the worst.

BottomlyPottsWithoutTheSpots Tue 15-Sep-15 15:46:56

Thank you Kamp. I really want to approach it positively like some of the stories on here (which I am clinging to at the moment), but I feel very panicky and anxious about it some of the time. There are moments when I think "yes, I'll do my darndest to live well with this", and others when it overwhelms me.

weegiemum Tue 15-Sep-15 15:52:45

I have an ms like illness, in my peripheral nerves rather than my central nerves.

I've had it 4 years, to begin with I was v. Positive then after about 6 months I got really down. Now I'm much more sanguine, just get on and deal with it day to day, not thinking too much about the future. Yes, it affects my life (I suffer badly with fatigue and numbness) but I just live my life as well as I can, take the treatment on offer and try to not let it slow me down too much. I work reduced hours and volunteer, have hobbies and am involved in my church. I can't walk round tesco but I can drive a wee mobility scooter to do my shopping!

I take a "Que sera sera" approach, live for today and hopefully tomorrow will be ok to. So far it's worked!

BottomlyPottsWithoutTheSpots Tue 15-Sep-15 15:59:21

Hi weegie. Sorry to hear you have something similar (is it CIDP?). I think a day by day - or even minute by minute - approach is all any of us can really do, but when we're well this is so easy to forget.
I've had mental health problems in the past, and am terrified about these coming back as a result of this. Although I do feel oddly calm about it sometimes in a way I never did when younger with the mental health problems.
Hope you're having a good day.

ricohricoh Tue 15-Sep-15 16:07:07

I was diagnosed with MS over 20 years ago. The first few years were grim as I was always exhausted and couldn't do much exercise without it bringing on a small relapse. Now I rarely have any MS related health problems as long as I don't over tire myself. I go to the gym regularly, have held down a full time job and nobody would ever know I was ever diagnosed with it.

When I was first diagnosed I was told by a very wise GP that I shouldn't plan for a future with MS as I may never get any worse. She was quite right.

BottomlyPottsWithoutTheSpots Tue 15-Sep-15 16:09:39

ricoh, I'm so pleased for you that things are good. And what a positive story to hear - thank you so much for posting.

ricohricoh Tue 15-Sep-15 22:38:38

Bottomley I'm glad that you are taking some comfort from the posts on this thread. I still sometimes get patches of numbness and my legs feel wobbly occasionally but I now recognise the signs that I'm overdoing it. If I feel tired I just take a nap. So treat yourself kindly.

CrazyBoo Wed 16-Sep-15 10:42:08

I'd also add that the medications available now are fabulous. Especially if you're being caught early on in the disease, you are never better placed than now ( as opposed to, say, 20 years or more ago) to be diagnosed and started on a treatment plan. I've had MS for 20 years and been on a few medications - and I'm now on one that works really well for me. Best wishes to you ... I know it's scary, but find a good dr, and you'll be OK - really :-)

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