My DH has just been diagnosed with MS --- can anyone help?

[Page62]

Hi

My DH has been diagnosed with multiple sclerosis (though we are in the process of getting a second opinion, but not getting hopes up).
Everything i have googled tends to depress us --- can someone who has any experience here point me to somewhere more uplifting?
We have 2 DCs who are 4 and 2 and i am petrified.....

i am off to a meeting but grateful for any response.

Thank you!

Hi, I am a community OT and see lots of people with MS.
There are treatments around now that may help so now you know what the problem is you can get some help.
The MS society is worth a look too - lots of helpful info.
sorry cant be more help but expect someone who can will be along soon.

Just wanted to express my best wishes and sympathise at a difficutly time. I know what the waiting and not knowing is like. I am a long term sufferer of ME (currently in good health right now) which has some similar symptoms and for 18 months they suspected MS. It was a terrifying time! I was lucky ([hmm)and it was just ME but I still know what the waiting feels like! I also have an uncle with MS. He has the worst most agressive form of MS (he has had it 12 years now) and although physically he is suffering now he still has a happy and fufilling life! I think he actually has a more fufilled life now because it has re-address his prioritises, like family. Without wishing to trivalise it, MS is not a disaster, it can be lived with and there are worse things you can have!

I have a friend who was diagnosed with MS a few years ago and she copes brilliantly, she has continued working and had another baby. I'm no expert and hope someone who knows more about it will come and post soon, but just wanted to offer you something positive! I think mainly she had adapted her lifestyle to help her manage the illness.

You need to speak to Issymum, whose DH was diagnosed with MS ohhhhhh ummmm about 15 years ago now I think? I'll email her the link to this thread.
I'm really sorry, it must be a huge shock for you, but googling always makes things scarier IMO. Best of luck to you both.

A friend of ours was diagnosed almost 20 years ago. He is in good health, had a high powered job, and has continued to work as a consultant after retirement. The only sign is that he drags his leg slightly when tired, but it really hasn't stopped him 'living' a full life.

ms falls generally into categories (sorry if you know this already) benign( Mine) relapse/remitting and progressive. Based on speed of deteriation. Everything depends on how your husband presents really, but in my experience dont just listen to the gp and the ms soc (who can be sooo depressing), there are many,many groups on the web who can be of tremendous help and support, more so than the professionals in my experience, who are sometimes constrained by lack of funds and knowledge.

its down to management ,medicinal (as far as it goes ) and practical ,again dont catigories your husband too quickly. Sites like the msrc were very helpful to me ,and there are some great international ones. good luck.

Hi everyone,
thank you so much for the responses.

Issy, thanks, i will CAT you.

Moyasmum, is there anything you do diet/exercise wise that you feel has been particularly helpful?

So sorry Page62 - was about to refer you to Issy but I see PPH got here before me!

Thanks Kew
Taking the view the more info we have, the better (hopefully) prepared we could be....

Like i say im benign (last attack 5 years ago).So im very lucky,but i havent found diet/ exeercise useful in particular.
I take ginko and folic acid for my senior moments and try to avoid stress if i can. When I go for a walk over a couple of miles i take a hiking stick because my right leg tends to forget where it is going. Being tiried brings it on more.
If you look at the mri, the plaques they may look alarming, but its where they are that determines severity. Always look at you husband and how he is ,rather than the named condition. support him,if he doesnt deteriate be happy,if he does,depending on need,be active.

Sorry to hear about this diagnosis. It must be a very worrying time.
I would agree that the negative stories about MS outnumber the fact that the majority of people with MS live normal active lives and cope with their condition. Health professionals (like myself) see the other end of the spectrum, and I think that tends to give us a biased view of MS as a condition.
My advice would be not to be defined by the disease, and to deal with it as it comes. One step at a time. Find out if you can which type of MS they think it is then take it from there. There are many many conditions to help with MS these days.

Sorry I meant treatments to help...

I'm sorry to hear you have had a shock like this. I don't know if it's of any help but my mother has MS - diagnosed about 10 years ago, but probably had it for longer - and she is absolutely fantastic. Sometimes she walks with a stick, she can tire easily, but she is active and positive. She swims, does physio, walks her dogs, goes out, acts in plays, goes on holiday, and if you met her without knowing I don't think you'd guess.

Someone mentioned diet and this is covered in a book called Multiple Sclerosis by Jan de Vries, as well as many other places I'm sure. Someone may have done this link while I've been typing, but the MS Society is on the web and MS awareness week starts on 21st April - next Monday.

As others have said, there are so many forms of MS and obviously I don't know about your husband - and I'm not a medical person anyway - but I just wanted to add to the voices which will tell you it doesn't have to be a disaster. I have worked with MS sufferers who have had a worse time than my mum, certainly, but I think you don't often hear about the good stories.

Good luck to you and your husband and family.

page 62 - My DH was diagnosed Nov 05 when DS was just 12 months old - we are due to have DC 2 within a couple of weeks so life does not end with the diagnosis!

Just remember that everyone else's MS is not the same as your DP's MS - so don't be depressed by anyone else's condition.

On a very practical note - eating a regular diet (lots of low GI food to keep energy levels up) and keeping cool certainly helps fatigue - DH now wears lots of cotton/linen clothes and has iced water whenever possible

We went through a very dark time when DH was first diagnosed - lots of tears, ups and downs etc but it does get easier - we now have a laugh about it most of the time (arguing over who makes the tea - he says "I'm disabled" and I say "I'm in a delicate condition"!)

My Uncle was diagnosed when his children were young (about 12 years ago). He's still a taxi driver, he does get tired but he doesn't seem to get hindered too much by MS. He is 47.

It's not all bad news.

Oh Page62, I'm so sorry. I have nothing useful to add, just wanted to offer some (((hugs))).

Thanks everyone, for all your support.

We are definitely taking this a day at a time and will look closer at the things we can control (diet, for example). Believe it or not, my DH already has Crohn's so the diet is pretty good anyway (no gluten, limited diary etc) --- just our luck (or lack of).

Must keep positive. Must keep positive.

AtheneNoctua, thanks for that. the only upside is my SIL doesn't make snide remarks about me working FT anymore. Hahahaha (i find humour in everything).

My dad had multiple sclerosis for over 40 years and worked as a painter and decorator for about 15 years before his illness became too much for him. Up until about 2 years before he died he was still managing to get out to his car to go for drive. He had a car with hand controls and felt that being able to do this made him feel like he still had his independence.

Like other people have said it does depend on what type of MS you have. My dad was a truly amazing man and fought against his illness with a very positive attitude while bringing up myself and my sister, he had a happy life and lived to 78. Also just before my dad died my sister was diagnosed with MS. Her only symptom other than tiredness was a strange sensation in her left leg that did'nt go away. She leads a normal life and works as a carer, she also eats a very healthy diet.

My friend's mother was diagnosed it when we were still at school. 16 years later and she will be in her 60s now and she's just in a wheelchair now. It has been decades for it progressively to get worse. It does seem to come and go with some people too.

Part of the problem is just not knowing - will it progress badly and we need to be thinking about living on my income, help at home, moving house or will he have 15 years of normal actively working life by which time the children will be virtually off our hands and on the way to university. The not knowing is the hard bit. But then I suppose we never really do know what will happen in life. I never imagined I'd be divorced.

I don't believe you were at school 16 years ago Xenia... do you mean 26 years later?!!

I was misdiagnosed about 20 years ago; but finally was diagnosed with ms in 2001. They decided I had benign ms up until then and that I now have relapsing/remitting. It was a shock, but I was also relieved as I finally knew why these ridiculous things were happening. Also, getting some medications and support helped too! For the three years before then everyone had just thought I was a lazy cow!

I didn't find googling it helped much either. Very little of what I found seemed to be relevant, and I especially hated the ms society. I don't know why I felt so strongly about them but I did. It's not just that dh and I both joined and then they kept sending each of us very expensively produced magazines, in separate envelopes etc, thus doubling the cost and wasting money. I found the magazines fairly smug too. And nothing they said really seemed to apply to me.

You will get a lot of people trying to 'help', and suggesting - sometimes really weird - treatments. I felt desperate enough at first to try one or two, but as time went by I realised all that was happening was our wallets (light enough already) were getting lighter. Take your time to get used to the diagnosis. Take your time to find out what your dh is OK with and what he's not OK with. Take your time finding out what you're OK with. Don't jump into things. Don't be afraid to ask for help, and that includes benefits like DLA, which whether you're strapped for cash or not, open the way to a few other useful things.

What others have said on here is quite right. It is not as bad as you think (dh thought I was going to die!). CAT me if you want to.

my sister was diagnosed with MS after the birth of her second dc. I don't want to lie to you and tell you she's managing fine. It's been very hard, not all the time and every day but when she does have an attack, it is very hard for a certain time and then mobility gradually returns but she seems every time to lose more mobility permanently IYSWIM. I don't know much about how differnt people's MS develops differently etc, I just know her case and obviously I am very involved in her life/health problems.

She is lucky in that her dh is a gem and stands rock solid behind her the whole time and thank God for that. I think he is the single most important stabilising factor in her life and she just knows he is 100% backing her all the way. If you can do that and I bet it is far from easy I think it is more important than any therapy/diet. Good luck to you and dh, hope you hear what you are hoping to hear