Awaiting results

New diagnosis and before diagnosis
1

My wife of 31 years had an MRI for preperation to extract a facial tumour. As it turns out, the tumour seems to be fine (we previously had been informed it was benign anyway), but they have found lesions.

She is having a lumbar puncture this week.

I am an utter wreck. Practically unable to function. Yes this is the wrong attitude I know, but my mind tends to work this way when it comes to health matters. I have read a lot about MS this last few weeks since the MRI. Whilst I dont particularly like much of what I have read, I have also come across positive information too. People who, yes, have to deal with the hardships and unpredicatblity of the disease, but through the right attitude and lifestyle manage to live a meaningful and generally good life.

Is this a fantasy or a reality? Can a life with MS be a good life?

The curious thing is that my wife has not had any major symptoms, although she has had minor ones over the last few years. I suppose that even with a positive diagnosis, it could be some time yet before something serious happens and she has a relapse. Is this a fair supposition?

Sorry for sounding weak and miserable.

2

Hello

You don’t sound weak and miserable to me…just worried, which is understandable. Wait until your wife as the results from the lumbar punture and what the results show.

You don’t know what the cause of the lesions are yet. Just be there for your wife…I’m really glad to hear the tumour is benign. This is a really stressfull time for you both, I hope you have family and friends supporting you.

Let us know how things progress with your wife’s tests…I hope things work out well.

Take care

3

MS changes your life but it’s a change in pace and not a death sentence, that’s the only way I can look at it (that’s a personal viewpoint)

How’s your wife coping? It is gonna mean some changes… maybe but not everyone has obvious symptoms. It doen’t sound like she was expecting it. I was shocked when I was diagnosed, I thought I had a trapped nerve!

Good luck to you both and hope everything goes smoothly

Sonia x

4

I agree with Blossom and Sonia. A person cannot expect to take this sort of stuff in his stride: you have both had a bad shock, out of the blue. No wonder you don’t feel great.

And yes, life really does go on with MS, and people get on with it and make good lives for themselves. Worrying about whether one has it, and getting used to having it tend not to be great times in a person’s life, I have to say. But the shock passes, and the person adjusts, and our normal selves reassert themselves. Hang on in there. Even if it does turn out to be MS (and I hope that it doesn’t) it is not the end of the world.

I am so glad that the tumour is not a harmful one.

Alison

5

Thank you for your kind and thoughful responses.

Today she had the lumbar puncuture. The doctor said other causes of the lesions are unlikely.

My wife will not talk about it and gets angry when I try to do so.

Blossom, Sonia and Alison - do you have MS?

In my readings of blogs and comments this last few weeks I have come across so much along the lines of MS being a life that is “barely endured” or “you struggle to cope with” or “an horrible and depressing existence.” Sometimes the internet can be a realy bane. It has served only to make me feel a lot worse about the condition. At least here

What I need right now is to hear honest viewpoints that are contrary to such statements. Yes, I can accept that it can be VERY hard at times and a big challenge, but I can’t accept that this will ruin our lives, and make my wife, who I love so much, eternally miserable. I guess what I am demanding is assurance that it is not like that, but I am also demanding honesty. I hope and pray that I am not demanding too much.

I am trying to collate a list of lifestyle changes or actions points that she/we will need to make. So far I have scribbled down diet/excerise/meditation/counselling/massage/positive thinking excerises. Can you give me any more suggestions to add to this list?

Today truly has been the worst day yet - going to the hospital and speaking to the doctor. Last night the baby wouldnt sleep and I got so stressed I smashed something and screamed right in the baby’s face, making him cry inconsolably for an hour. This is HIGHLY irregular for me. Its like an impossibly bad nightmare. Surely I am going to wake up, aren’t I?

Thank you again for any valued support you can provide.

6

Hello Again

I was diagnosed with MS last August. It was quite a shock for me…I was referred to neuro with chronic headaches and migraine. My type of MS is primary progressive.

I was very upset and tearful to start with, my emotions were all over the place…very angry too. Its very much like going through the grieving prcocess.

I’m quite a positive person and now just concentrate on trying to take each day as it comes.

I have a few close family and friends who are very supportive. I still go out and enjoy myself…have a few laughs.

I do have quite a few problems relating to the ms but I deal with them. They don’t stop me living my life, I’ve just had to make a few changes.

I still think you should wait for the results and a diagnosis. Its also not advisable to go looking on different websites and scaring yourself.

If it does turn out to be ms…it WILL NOT ruin your lives. It will change your lives though but life in general changes anyway.

You ask for honesty!! Please do not lose it and scream in your baby’s face. If you must go smashing things, go into another room. You really need to calm down, your wife needs you to be strong for her. I promise you., there is life after MS.

Take care

7

Please take a deep breath and calm down. You are thinking in extremes (ruined lives, eternal misery, impossibly bad nightmare). Etc. Those words are not a good description of life with MS any more than their opposites - ‘blissful lives, permanent rapture, unbelievably wonderful dream come true’ - are a good description of life without MS! Life’s not like that. Life without MS is mostly somewhere between pretty darned good and OK (despite everything). Life with MS is mostly somewhere between pretty darned good and OK (despite everything). What more can I tell you?

This is not a good time for you, but don’t make a drama out of a crisis. Try to take your cues from your wife: she is the one with a potential diagnosis to face. She is the one who calls the shots in terms of how she wants to play it - whether she wants to talk, or whatever. Your job is to support her while managing your own (perfectly understandable) strong feelings. That is a very, very important thing for you to be able to do for the person you love.

Alison

p.s. I have had MS since 1999

p.p.s Please do not present your wife with a list of the lifestyle changes you have decided that she needs to make. Not unless you want to lose a valuable limb.

A x

8

Hi access You don’t say how old your wife is - I assumed a bit older as you said you’ve been married 31 years but hen I got confused when you mentioned your baby. From what I’ve read, women who are older at diagnosis tend to have a better outlook. However, ms is one of those conditions that is very individualised. I’m 42 and was diagnosed in June and was told it’s likely I’ve had ms for at least 5 years. I’m a single mum, still able to look after my two boys, go out with friends and work in a demanding job. I’m just at the stage where I’m considering dropping a day from my full time role. So far, ms hasn’t stopped me doing anything, it just means I have to pace myself more. I would agree with Alison that giving your wife that list of lifestyle changes isn’t such a good idea. She may not have ms and if she does, she will deal that that diagnosis in her own way. Sme people need more time for things to sink in and to reflect whereas others are spurred into action and want to fix things. I suspect you may be the latter! It’s totally understandable at you will want to do anything you can to support your wife but in this case that might be remaining calm, sitting quietly with this and just being available for her to talk to when she is ready. I wish you both well and we’re here for you to vent so you can keep it away from your family x

9

Hi

Yes I’m diagnosed with MS (Apr 2013), likely PPMS (Jul 2013).

It was a real shock for me. I’m 43 but in good shape, I was still teaching polefit classes in the gym just a couple of weeks before I was diagnosed. I thought I had a trapped nerve! I think diagnosis is a bit traumatic in itself, people are worried an there’s alot of explaining when you’ve barely had time to get your head around things. I’m guessing it was probably a shock to the system to you both too. I didn’t even really know much about MS, just that it was serious.

I was embarrassed every time somone told me how brave I was being, I was mortified because after the PPMS bit I was lucky to manage whole day without tears but it calmed down, as I accepted it, and realised that I was just carrying on as normal.

There were a couple of things that happened around the time I was diagnosed that helped me keep calm etc… Within 2 weeks of my initial diagnosis, I lost a colleague at work to a brain tumour - it made me realise I was lucky, yes I had MS but it wasn’t a death sentence.

I also had a couple of people approach me and ask about my diagnosis, one had a CIS episode so may one day develop MS and the other’s partner sounded like they had MS yet was still undiagnosed and having terrible problems that impacted their life. My symptoms are frustrating to put it lightly but it won’t kill me!!! That seems to be my mantra and I’m sticking with it

If I have the odd day that I feel down, I keep myself to myself. If I have the odd day I feel sorry for myself, I eat chocolate, have a sob and tell my husband I need a cuddle, I think I’m entitled to the odd wobble.

On the days I feel strong, I tackle what I can and the rest of the time, I get on with my life as usual

Good luck to you both, you will both be fine… and now you know where to come if you need to offload, moan or ask advice

Sonia x

10

Thank you for your considered answers.

I’ve have just been on the msworld forum. Very bad idea. VERY dooming. It is awash with quotes such as “this hellish disease stole the best years of my life”.

Well I suppose that is what we are dealing with then.

:frowning:

11

Thank you for the useful warning to steer well clear of the msworld forum. (Not that I would have been tempted anyway…)

Please bear in mind that the people with MS who have most time to mess about on forums are the ones who are a bit knackered by it, and of course you are going to find a lot of folks (me included) who are pretty fed up about that. But the many people with MS who are juggling work/family/home/social life like normal people are too busy getting on with their lives to bother faffing around on here (or ms world) much, and so you won’t hear from them. So beware the unrepresentative sample effect.

Alison

12

You are very negative at the moment…which is understanable. If you don’t mind though…my life is not “hellish” and I like to think I’m good for quite a few more exciting years yet. Why!! I’ve had at least two laughs today lol. sorry!! I’m being sarcastic.

If I was you I’d keep off that other forum…they sound depressive…it could be catching

How is your wife doing…you’ve not mentioned her?

Take care

13

Hi,

Yes I will keep of that forum. And so should you. The OMS one is better.

My wife is not thinking about it. She doesn’t even know what MS is. She says she’ll deal with it when the results are confirmed.