Active discussions

Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

Talk
General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

Dh has just been diagnosed with MS

34 replies

sammac · 24/11/2006 21:06

and I'm looking for ......I don't know? Positive stories, advice, hope.

It's taken us by complete surprise as he really is my Mr Incredible and can do everything. But the symptoms have been put together by a neurologist, and he's had tests, and it's been confirmed.

I don't know what to do next. Have got information from the MS society, which has been useful(well apart from the adverts for wheelchairs, but we've ignored that) Don't know anyone in the same boat.

We're trying to be positive(mostly) and I know that there are a lot worse things around, but I think that I need to write this down at least. So bear with me on this.

OP posts:
VeniVidiVickiQV · 24/11/2006 21:08

I know barely anything about MS but MN is wonderful and I am sure you will get some good advice.

x

WideWebWitch · 24/11/2006 21:09

I think it's hatwoman who has MS, let's hope she sees this.

Willow2 · 24/11/2006 21:09

I know very little about MS, but just didn't want you to think your post had gone unnoticed. I used to work with someone who had MS but was in remission (if that's how it is referred to) and she was a very successful TV producer and, by the looks of credits I see, still is. So think you are right to think positively, but can imagine how hard that might be. Anyhow, just wanted to send you a hug and let you know that you had been heard.

Original poster
sammac · 24/11/2006 21:13

Thanks guys, you honestly don't know what that means to me that you posted.

OP posts:
WideWebWitch · 24/11/2006 21:15

Sammac. I bet you get some really comforting advice when some knowledgeable comes along.

Aimsmum · 24/11/2006 21:17

Message withdrawn

Flossam · 24/11/2006 21:17

Oh sammac, sorry to hear this. Unusual for a man to get MS - is most often a womans disease. I don't know much about it but the thing I do know is that the two people I know who have it both lead relatively normal lives and have been diagnosed for many years. We have patients in with it sometimes, right across the spectrum. Treatments are always evolving. I hope you are both ok - must be a terrible shock to have such a diagnoses. Hugs to you.x

alexa1 · 24/11/2006 21:18

hi. there are a few mumsnetters with ms. i can't remember their names but hopefully they will see this post and come on and post.
if u click on 'search all messages' at the top of the page, then type in MS, it will come up with all the previous posts on MS.
best wishes and think positive.

Issymum · 24/11/2006 21:18

Hi Sammac

DH has MS. He had his first symptoms when he was around 26 and diagnosed at 28; he is now 42. We are not your "positive" story in that DH is a wheelchair user. However, I can certainly provide advice and perhaps a sort of modified hope in that DH is happy, fulfilled, medically stable, continues to hold down a very responsible and well-paid full-time job, is a highly involved father to the two girls we adopted from Asia subsequent to the diagnosis, swims twice a week, enjoys adaptive skiing and drives a standard BMW 5 series adapted with super-advanced hand-controls (these things matter to men!). He is perhaps unlucky by MS standards that he is in a wheelchair.

I must dash, but I'm happy to continue this thread or chat to you via CAT if that helps.

Issymum

PS I always found the MS Society bloody miserable. There are more useful sources of information out there!

alexa1 · 24/11/2006 21:19

flossam - any ideas why it is more a womans disease? curious to know

PeachyClair · 24/11/2006 21:19

I'm sorry this happened to you

I nursed someone with MS once, but other than that no experience. However I wonder - if you call your neurologist, maybe he could put you in touch with another family in your area in the same position?

Also, as you use MN you're a chatroom sort of gal.... here's one I found for MS here

hope it helps

X

Katymac · 24/11/2006 21:20

My Uncle was diagnosed with it in his early 20's........he worked until he was in his mid fifties and dies in his early 70's.....I don't know if that is a positive story or not?

Overrunnerbean · 24/11/2006 21:21

Hi Sammac, my Father was diagnosed with MS in 1979 and he is still fine, so thats pretty positive
I guess the thing about MS is that there are at least 5 different types, so you just have to be positive and assume that your dh has the most benign kind, unless proven otherwise.
There is some research which supports taking various minerals and vitamins and eating a low fat diet. This is what my Father had done, but I am not saying that this is what has caused him to be so lucky.

Aero · 24/11/2006 21:21

Sh*t honey - I just knew this was your thread. I'm so sorry the tests confirmed your fears. Just going back to read the other posts.

You're both strong and positive people and so will be able to deal with this.

Just going to sign in............

Issymum · 24/11/2006 21:22

I should add that there are some really hopeful new treatments out there (some available some not) and that a good chunk of people with MS appear to have been successful in stabilising their disease with nothing more remarkable than a serious change to their diet.

Flossam · 24/11/2006 21:24

I don't know - and the two posters on here since seem to beg to differ! Men I was taught, were more prone to get motor neurone diseases, women more likely to get MS. I can't ever actually recall caring for a man with MS, but can recall several women.

Issymum · 24/11/2006 21:24

This is a good place to start your research.

Flossam · 24/11/2006 21:25

quick link here apparently women twice as likely.

tribpot · 24/11/2006 21:29

Sympathies. My dh has a chronic condition which is similar although he has no firm diagnosis. I know it's hard to see that as a plus but you have a basis for planning and moving forward (not that any disease conforms to a handy timetable).

The MS Society website looks good (here for any interested readers) - I suggest you get yourself in touch with your local group and really make use of those contacts. I've found that in any chronic condition the need to keep the pressure on health care professionals is excrutiating; I would like to hope it was different in a 'known' condition like MS but even if it is, you will need support from like-minded individuals.

Gather information. Don't be afraid to look at alternative therapies, even if previously you might have thought they were a bit bonkers. Consider things like dietary advice which may help you.

This sounds awful, but if you don't know people in a similar situation you could end up feeling very alone. Mumsnet is a lifeline for this kind of thing. But people who do not have to deal with a life-encompassing condition just don't get it. It's a bit like being a parent, in that there is no way to explain what it's like to a non-parent. Put your support network in place.

Don't be afraid of not knowing what to do next. One of the upsides of these conditions is that they are slow-moving, so you have time to plan your next steps.

Don't feel that you need to feel 'there are worst things around'. Yes, there are - but they aren't happening to you. You will both have all the stages of grief to go through, don't feel you shouldn't allow yourselves that.

I honestly don't know whether to post this, or whether it seems too bleak. Please ignore it if it upsets you; I'm in a very different part of life from you and it's unlikely you'll ever end up where I am, flailing around for any diagnosis or treatment that might help.

Keep posting - and take care.

Aero · 24/11/2006 21:40

Lovely post tribot with lots of sensible advice.

Am on MSN sammac if you need to chat....

mummynetter · 26/11/2006 20:57

My aunt had just been diagnosed with MS. I will pass on some of the info from this site.

Cheers.

Original poster
sammac · 26/11/2006 22:29

Thanks everyone for your advice and thoughts. I was trying to explain to Aero earlier about how this has affected us, and it really has left us all mixed up. Good suggestion from her just to get out and have some peace to talk about it without little ears hovering around!

I hadn't seen any of those websites mentioned, and have had a quick look. I'll pass them onto to dh for when he is ready. Thanks again x

OP posts:
edam · 26/11/2006 22:36

So sorry Sammac. Can second MS Society, really helpful. Some people do find changing their diet helps although there's no hard evidence. Be careful about alternative remedies - MS Soc good on what might be useful and where theres no proof. There are, sadly, an awful lot of quacks out there who make a good living out of exploiting people with MS.

You'll need to do your research as there are a lot of medical and nursing professionals who don't really know much about MS - it's still relatively rare (your average GP might have one patient with MS, for instance).

robinpud · 26/11/2006 22:53

A good colleague of mone was diagnosed at 21 and was in a wheelchair. She is now in her early 30s and leads a very active life- parachuting etc. She has had the odd little relapse when she over does it but with correct medication and a sensible attitude you would never ever know she had such a chronic illness.
Here's hoping that you ds can get his meds right and live the same sort of full on life that she does.

Aero · 26/11/2006 23:41

Just a wee bump for Sammac in case anyone else has experience of MS.

It'll take a while for both of them to get their heads around this, so any info/experience and positive thoughts on this condition I'm sure will go a long way towards some kind of acceptance and a desire to get on with things as best they can.

Good to chat earlier Sammac.

Swipe left for the next trending thread