DH just diagnosed with MS

[herbaltea]

Don't know what to think. He doesn't seem "ill" as such. Has been very fatigued but works through it - the diagnosis has come as a bit of a shock. Been reading probably TOO much on the net about MS and it's so fecking variable and unpredictable. A lot of past stuff now makes sense which makes us think that he's had it for at least a decade. His mobility is not affected (yet) and his eyesight is good (so far) but he has had numbness and tingling in his hand for YEARS that we thought was RSI but obviously that was MS. Don't know why I'm posting really I suppose I just want to hear from others with it or who are in a similar position.

sorry to hear about your DH, if this is any comfort ,a very dear friend of mine was given a diagnosis of MS 22 years ago and is still fit and well, with only occasional episodes of tingling and numbness.
She makes sure to eat well and takes time off work if having an episode but otherwise no other problems (she's 48 btw)

really sorry to hear that.
xx

One of my dearest friends has MS and has been diagnosed for over 10 years but had symptoms well before that. She is a very determined person and battles on through any relapses. If you don't know her well you wouldn't know she has it.

I have heard her say to other people that she believes the key to her health is being a patient at a specialist centre rather than just at the local hospital. She travels 50 miles or so to The Walton Centre for Neurology at Aintree Hospital, Liverpool and says they are so expert in the field that she knows she is getting the best treatment and hears about any clinical trials that she might want to partake in. It might be worth finding if there is a similar centre near you.

It is a very variable disease so one of the keys is a positive and determined outlook (I know that's easy for me to say but I know my friend would say it too)

Good luck to you both.

www.medindia.net/news/Italian-Doctor-Takes-His-Campaign-For-Neck-Vein-Surgery-For-MS-To-Canada-70154-1.htm

My SIL has had this treatment - so far so good. Wish you and DH all the best

hi there. I was dx in 2000. and the uncertainty is horrible. I also know that, at this stage, anecdotes about people having mild ms don't really do much to shift your deepest fears. what I will say is that emotionally you do learn to deal with the uncertainty thing - it's very hard and will probably take a while but it is something you can get your head round. and you will let yourselves get on with life and enjoy it.

the other thing I will say is more practical. when I was diagnosed they didn;t have ms nurses and follow-up was rubbish. one of the worst things was not knowing who to talk to when I was worried or had questions. so - make sure you have a first point of contact at the hospital dh is at - it will probably be an ms nurse. no-one wants to phone a consultant neurologist with questions - but equally no-one wants to spend hours awake at night worrying and/or get none-answers from a GP. so get that contact - ime ms nurses are invaluable.

if you want anything else do ask - pm me if you like

Thanks all. Razors where in the world is your SIL? Your link made interesting reading. Always encouraging to hear of people who have been years with a diagnosis and are still basically OK. I'm hoping that the care my DH will get will be good as we are in Scotland which apparently has the highest incidence of MS in the world (what an accolade!). Have only been given the diagnosis over the phone by the neurologist and don't have an appointment with him again until the middle of May.

Thanks very much hatwoman. I posted before I read your post. Understand about the wanting to have a contact to speak with - want that now really. DH might call the neurologist and see if he can point him in the direction of the MS nurse.

just read AFS's post and have to say that the whole positive attitude and determination thing is very complicated. one of the hardest things about being ill, for some people, is accepting limitations. I had a relapse last year and, although it's impossible to know for certain, I am fairly sure that pig-headedness (ie determination by another name) cost me a month or so in recovery time. don't fall into the trap of thinking you can be determined not to be ill. Positive attitude is great and of course helps the spirit, but it won't rebuild myelin.

ok if positive storiesare encouraging then I'll tell you I run marathons. and have had abt 3 relapses in 11 years

hatwoman. I hear what you're saying. DH and I have both said that we will probably find it relatively "easy" to be positive until he has an actual defined episode. At the moment it feels a little unreal, I don't think we know what we're dealing with yet and won't until it hits the fan. That will be the test.

Have you had news as to the type of MS he has as that will certainly help you prepare for what is to come.

Best of luck

Thanks Hardhatdonned - We don't know the type for sure - we are "hoping" it's relapsing remitting.