Any ideas pls

[Willow]

Thanks again.. xx

 

I just don't know what to do, I think I will ring my GP and just have a word, it can't do no harm. He is not on the steroids anymore and he knows he gets tired. Yesterday he tried to help around the house being the stubborn man he is, so he decided to clean the shower room, well that sent him backwards, all day after that he was all over the place. He wakes each morning and that when he does he seems really bad, understand his body has been laying down for hours, then as the day goes on he seems a bit better but the moment he does anything phyical well then it hits him.

 

I know today will be hard, every day is hard and he says it takes all his time just to think about walking from the kitchen to the lounge, he says he has to think about every single move he makes, every obsticle in his path, the dog, cat, if the kids come running in. Even standing at the fridge to balance, open the fridge bend down and pick up the milk, hold the milk, close the fridge door then walk back to the kettle and make a coffee, I see him doing this and it kills me. I can only imagine how hard it is, I can only stand back an watch (without him knowing, I am watching every move he makes, yet he no doubt feels my eyes) only because I love him.

 

Am going to ring and find out when his next MRI is and as for the neuro, I really have no idea xx

 

Rang GP, they won't speak to me understandably due to confidentiality and I know he will not ring them nor go and see them ....................................

Edited 30 Jan 2012, 10:48 am by Willow

[Willow]

Hello,

 

Good news, just had a phone call from the hospital and hubby has his second MRI booked for this Friday, am feeling so much more positive after everyones posts of comfort and with speaking to MS nurse yesterday. Hubby and I had a good chat last night and he seems slightly better, I have told him all about this site and all what you have all being saying. Thanks xxx

[Scully]

Hello Willow,

 

Good to hear some positive news from you. I'm glad you had a productive chat with the MS Nurse, and she has left the door open for your husband to call her should he wish too.

 

It's also a positive step that you and your husband are able to talk, in depth about how you each feel about everything. Communication can be difficult when one half of a relationship has a possible debilitating condition, but, you are making the right steps forward. It's brilliant that you have both opened that channel and are able to lay your feelings out. Men can often find it difficult to express how they feel, especially when they don't feel well and are anxious.

 

Well done both of you, and hopefully the next MRIon Friday will help the Neurologist to pin things down.

 

Scully

x

[Hezza]

 

Glad to hear that you're feeling more positive and have made a little more progress, Willow.

 

xx

[Willow]

Hello all,

 

When will he listen if not to me surely he must soon listen to his body. Hubby managed to get out to work yesterday again he had someone to help him and when he came home he could hardly walk!!!!!!!!!!!!!!!!!!!

 

What can I do? He will not let this beat him and is determind to fight it every step of the way, but when he came in Oh God he was in a state, I ran him a nice hot bath (I didn't watch him tackle the stairs) and told him to chill. I just wish he would listen and I feel totally powerless to help him. He has gone to work today and again he has help with him but I just know when he comes home he will no doubt be the same and it's killing me watching him go through this. Yes I understand we need the money but he is more important and I fear he will do himself more damage but i'll say it again "What can I do"? xx

[angeltess]

Hi Willow, from what you say I think you're really doing all that you can. It seems that your husband is a hard worker and conscientious, and that is something which isn't easy to just 'switch off'. When someone has always been active and hardworking, it comes as a shock to the system to have to listen to the body and slow down, and part of him will be fighting against it, not wanting it to get the better of him.

 

So long as you're there for him, and just try to explain that he's not failing anyone by looking after himself - in fact, he'll probably gain more in the long run by taking necessary rests - there's not much more you can do. If he knows just how concerned you are for him, he may be more inclined to take it easier for your sake, rather than for his own, if that makes sense.

 

Jan. xx.

[Hezza]

Willow,

with Jan, I think you are doing all that you can for now. I hope that having the forum here for support and to vent those feelings when you need to is helping in some small way.

 

xx

[Stumbler]

Willow, I've been following your posts and feel for both of you.

 

The onset of any condition like this sends us all on an emotional journey and it may be useful to focus on the various stages of this journey :-

 

1. Shock and Denial

2. Pain and Guilt

3. Anger and Bargaining

4. Depression, reflection, loneliness

5. The upward turn

6. Reconstruction and working through

7. Acceptance and hope

 

Now, this isn't a normal journey from A to Z in a specific amount of time. You can revisit any stage, even though you may feel that you have moved on.

 

Obviously, acceptance and hope is the ideal destination, but I hope that identifying these phases will help you and you husband see where you're at.

 

Best wishes

 

[Scully]

Hello Willow,

 

Stumbler is quite right, these stages are a process, it's not fast, and it's not easy I'm sorry to say.

And yes, sometimes we make it to the next step and then fall back, temporarily to the one before.

 

From you point of view, as the wife and carer, it is hard to watch someone you love go through any of the stages.

 

All you can do, is be how you are now. Loving, caring and giving. Be there for him, when he comes home exhausted and unwell.

 

Scully

[Willow]

Hello all,

 

Just to let you know Hubby had his 1st physio today and it was a shock to see just how unbalanced he is, I mean I have seen how bad he has been but today when he tried to do some basic movements he couldn't and almost fell over several times. Just getting him to stand with one foot in front of the other (heel to toe), he couldn't do it, I can, it's so simple and only then at that moment did I truly understand just how hard it is for him. I have seen him struggle every day but never walked in his shoes, not that I am but I hope you know what I mean, something so simple, it broke my heart even more. He has been given some exercises to do for the next 6 weeks and will see how he gets on with these until we go back. He was not so keen to go as he couldn't see how it could help him, but once everything was explained to him he could see that it will help him in the long run. I was so pleased because knowing how he is I had a feeling he would hate it but it was all good in the end. We are still waiting to hear results from his MRI the other week and am hoping it will be this week. Also so so pleased that the snow has nearly gone as its been so hard for him trying to get about, bet it has been hard on all of you who had snow. I have really changed my outlook on life these last few months and god I have taken so much for granted, you never know whats around the corner.

 

Hope you are all well xxxx

[Hezza]

Hi Willow,

Hard as I'm sure the physio appointment was for both of you I'm glad that you have come away from it with both of you feeling a bit more positive about it. Hopefully things will start to improve but it does take time. It's important for your husband to stick with the exercises that he's been given to get the most benefit so you may have to help to motivate him at times.

 

Fingers crossed that you will have the MRI results soon x

[Scully]

Hello Willow,

 

Pleased to hear that the physio was a positive move.

 

I swear by my physio. I found out all the things I couldn't do too. But also found that the excercises that they set, tailor made for each individual, do help enormously to strengthen core stability and weakened muscles.

 

Also, she makes sure that I am doing the excercises correctly which also helps.

 

Scully

x

[vix]

Has anyone heard from willow?

[Willow]

Hi am still here,

 

have started back to work this week as Mum is doing okay for now bless her and well hubby is how he is so best to try and carry on as normal........... xxx

 

Should get hubbys results from Neuro next week and they have made him an appointment to see him in early March, now not sure whether this is good or bad as when we saw him at the end of Jan he said he wanted to see him again in 3-6 months........so not sure how to feel about this to be honest, I hate this waiting game xx

Edited 17 Feb 2012, 10:29 am by Willow

[Hezza]

Willow.

 

I'm glad some sort of normality has resumed. Hopefully you will feel a little further forward once you see the Neuro again.

[Scully]

Hello Willow,

 

Pleased to hear that something akin to normality has resumed with you.

 

The results and the pending follow up appointment may shed some more light on what the current position is for your husband.

 

The waiting is one of the hardest things to cope with I think.

 

Glad you Mum is a bit better too.

 

Scully

x

[Willow]

Hi all,

 

just a quick question, Hubby had his 1st MRI in Dec and this showed multiple lesions in his brain the largest measuring 11mm in the left cerebellar peduncle. I understand this part of the brain is to do with motor control which would explain hubbys lack of balance and co-ordination. He also has them around his optic area all on the left side, which would again explain his slow vision ie, taking time to focus. I just wondered why they did not scan his spinal cord as we have a relation who is a radiographer and she mentioned that it would be a good idea if they did but not all NHS authorities have funding for this. No-one has the answers I know but just going from his 1st MRI showing mulitple lesions you would think they would look further and I really have no idea xxx

[Christina]

Yes, I agree that would seem a reasonable thing to be thinking Willow. Lesions in spinal cord can be present particularly when mobility becomes an issue. Something to ask the neuro or MS nurse about.

Chris x

Edited 17 Feb 2012, 1:07 pm by Christina

[Scully]

Hello Willow,

 

I think it would be well worth mentioning this at you next Neuro appointment. Depending on what the Neurologist found after examining your husband, they usually order MRI's accordingly.

 

Having said that, it's always worth asking the Neuro if he intends to scan the spinal cord at some point.

 

Scully

x

[Willow]

Hello all,

 

 

Well got results back today a lovely letter of 3 sentences.............................................. OMG really all it said was that last MRI showed more areas of inflammation and some treatment may be needed to prevent this happening more, what the hell does that mean.

 

 

Well hubby has just gone down hill tonight, won;t speak just sat there and he's now gone to bed at this time. He has been so positive the last few days and now this, can;t get him in any sooner than middle March to see consultant and I don't think he can wait that long. What does that mean more areas.....another part of the brain, same part....I don;t know what to do.

 

xxx

 

If i am feeling really shitty, god knows how he is feeling right now....all I do is moan on here so sorry lol xxxx

Edited 23 Feb 2012, 9:16 pm by Willow

[Christina]

Hi Willow

You sound very worried by this letter. What it's saying is that there are more lesions showing up, so it is quite usual for the Neurologist to be thinking of offering either steroid treatment or disease modifying drugs.

Although this sounds scary and your husband is probably finding it hard to hear there is more inflammation, it also means there may be some treatment available now that can slow down this process. It's a lot to come to terms with, getting your heads around what this diagnosis means and treatment options.

Have you been given the name of an MS Nurse to contact? She might be able to get an earlier appt with the Neuro, or explain the letter and offer some reassurance. If not you could ring the Neurologist's secretary and ask if she could ask the Neuro or Registrar to speak to you to explain things.

Try not to get too worried. Your husband probably needs some quiet time to think all this through. It's a tough time for you both

Chris x

[Scully]

Hello Willow,

 

I'm sorry that the letter from the Neurologist is somewhat vague.

 

It's clearly very worrying for both of you right now. Although mid March sounds a long way off, it is actually only a couple of weeks. I understand that this seems a long time for you both to wait of course.

 

Your husband, as Chris says, is probably not only worried for himself, but also worried about the effect this is having on you, his family and the future. I retreated for several days when I was diagnosed, not wishing to talk or speak to anybody. It really is a dreadful shock and a lot to take in.

 

I would also call the Neurology secretary and ask for a member of the team to call and explain in more detail exactly what the letter means. It does sound as though the py are wanting to move forward and begin some medication treatment, which is a good thing as he will now be getting some help he needs to control things.

 

Try and take it easy over the weekend.

 

Scully

x

[Hezza]

Willow,

 

As Scully suggests try calling the Neuro department and asking if someone can call to explain the letter. My own MS Nurse gave me that advice herself when I was having my last MRI. She said that the Neuro would write with the results but if there was anything that I didn't understand just to call and they would explain it to me as they are aware that we don't all understand the medical terms.

 

[Willow]

OMG, just sat and wrote the longest reply, pressed the wrong button and lost it all!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

Hi all,

 

Thanks again for the replies, means alot xx

 

Have been trying to work ongoing treatment they might offer Hubby, Neuro has already said steroids won't make much difference so guess they will not be prescribed. Then I looked at these Disease Modifying therapys but assumed you had to be diagnosed with MS first before they would offer you one of these. There are 4 from what I can see and am i correct in reading that you have to self administer these types if this is what they are going to prescribe. I should not assume but it's the waiting that hurts, just wish they could help him to stop getting worse. Just want to know if these areas of inflammation are in the same area, new area etc and what can be done.

 

Kids want us to go bowling tonight and I know Hubby will wnat to go to have some normal time with the kids but he can hardly walk, let alone try bowling, will speak to them when i get them from school and suggest something different. Hubby in a horrid mood today which is understandable, just wish I could do something.

 

thanks all xxxx

 

 

[Christina]

Hi Willow

I'm sorry, I didn't realise your husband hasn't been given an MS diagnosis yet.

I guess it's possible your Neuro might change his mind about steroids now he has results from the recent MRI. There will be much to discuss at the next appt, so it would be good to go prepared, with a list of questions. Hopefully he will also tell you a diagnosis and discuss the treatments he has in mind.

I hope you managed some reasonable family time.

Chris x