Forum

New to site

Hi there, My name is Louise.

I was diagnosed with MS about a month ago, I was wondering if anyone had any advise on how to help my husband understand exactley what this diagnosis means. I was hoping the ms nurse would give us loads of info that would help but unfortunatley she wasn't much help. Also I was wondering if symptoms like the major fatigue i've been experiencing is constant or should it get better after the relapse is over?

Hi Louise I am kind of new to site as well I was diagnosed in March. At the beginning my husband didnt want to tell anybody (not even family). I believe now he was scared and just wanted to get his head around it first which he has done remarkably well.

My MS nurse gave me literature from the MStrust which were brilliant both for him and the children. I too was very fatigued it is probably my main problem but it has improved, so much so that I am returning to work in august. I am sure that there are others on the site with more experience than me but I hope this gives you some comfort that hopefully things will improve.

Take care

missy

Hello Lou.

Welcome to the family.

Having MS dont mean your life is over,you are also going to have highs and very lows as you come to terms with it.Patience is the key for everyone,it takes time getting used to.Having MS dont mean your life stops.I have a friend who has milder MS and she leads a full life,she jogs daily and works hard.

If you have fatigue badly tell husband and family NOT to wake you up,this is the worst thing to do to someone with MS fatigue.He should check you are ok but do not wake you up.

You may have MS symptoms often mild and there for you can live a good life,on your bad days just take things easy,so what if you didnt clean house today your not lazy just your body and brain say no.You can push yourself to do things but this could cause your symptoms to worsen.Rest when you can and sleep when your body says sleep.Just remember your husband needs time to adjust to and he will feel your pain and stress.

MS suffers often have electric wheelchairs due to fatigue.The travel by there wheels as this conserves energy,less fatigue then more energy to live a normal existance.

If meds do not seem to be doing there job after a few weeks go back to your GP and have a chat with him,do not just sit there and think I will be ok in a few days.

I am sure others will input on your thread to help you out,we are all here for eachother.

Never feel your alone when you have us,even if you just want a good old moan.

Charlie,x

 

Hi Lou and welcome happy2

I'm sorry to hear about your dx. On the plus side though you now know what's wrong, which will make it easier to deal with once you've got your head round things.

There's lots of info available on here that you can order to be delivered by post or to download. The MS Trust is another site worth looking at. They have a publication called MS Explained which I ordered for family and close friends to read so they could get a better understanding of what MS is. People do find it difficult to understand how it makes us feel because they can't actually 'see' the symptoms. My parents were the first to read it and they definitely have a better grasp of MS now.

Fatigue is something that most ms'ers battle with. A relapse makes symptoms worse as can other things like the temperature, colds bugs and infections and so on. If your fatigue is a major problem then contact your nurse - there are meds available for it which can really help. I've been on Modafinil for a few years now and whilst it doesn't stop the fatigue altogether I definitely couldn't be without it either!  There's also a publication on Fatigue which has lots of tips worth trying.

Hope that helps!

Debbie xx

 

Hi Louise, and welcome to the site happy2

 

As the others have said, the MS Trust do some excellent publications about everything to do with MS. The MS Society do too. They can be downloaded from both websites for free and you can order hard copies for free too.

 

Please warn your husband (and keep in mind yourself!) that MS is massively variable. That means that the info booklets have to cover all the different possible symptoms - you will NOT get everything, and some of the symptoms you do get you may get only mildly.

 

As far as fatigue goes, you may find that it improves a lot once you go into remission from this current relapse. Unfortunately, fatigue is a really common symptom in MS though (I think it's about 85% of MSers who get it) so it may be something that you have to learn to manage. There are a couple of drugs that can help: modafinil and amantadine. Unfortunately, modafinil is hard to get these days, but it would be worth asking your MS nurse if you can try something if you find the fatigue continues once other symptoms have improved. When my fatigue is bad (e.g. during a relapse), I rest as much as possible, mainly because I can't do anything else(!). When it settles to more normal levels, I find that sleeping too much is not helpful. It's important to try and keep to a good sleep routine so that you still sleep well at night - too much sleep during the day throws everything out and adds to fatigue.

 

Exercise is good for fatigue too: MSers who begin to exercise regularly find their fatigue levels improve. So when you are feeling more up to it (don't exercise when your fatigue is bad), try getting into a routine of doing something. Make sure that you don't exhaust yourself, keep well hydrated and avoid overheating. You might find that your symptoms get worse when you exercise - don't worry; it's normal and it will get better once you cool down.

 

Couple of "housekeeping" bits for you: you need to tell the DVLA about your diagnosis and you should check any policies you have that might have a critical illness clause (e.g. your mortgage) because MS is a claimable condition.

 

Hth!

Karen x