Forum

Out of limbo land, an update ...

Good morning to all,

 

Well I had my long awaited app with my neurologist yesterday, after the barrage of tests performed over the last 4 months and yes, it's official, I have been dx'd with MS, ( gulp )!

A few of you will know that it's no surprise to me as I've suspected it for a cpl of years before eventually seeing my gp and getting the ball rolling so to speak, but I was surprised to hear that he's sure it's RRMS, ( as I had prepared or convinced myself it was SP ) and he believes I've had 2 relapses since Dec 11 and therefore meet the criteria for dmd's which he wants me to start asap. I was also surprised that he has estimated I've had the disease for at least 18 yrs. ( I'm 45 )

 

He prescribed gabapentin for my pain and said I should get my app with my ms nurse within 4 weeks ( I won't hold my breath ) and to have made my decision as to which dmd I would like to be treated with by then.

 

My gp had signed me off work for 2 weeks as my symptoms have gone abit crazy of late and I was finding it abit hard to cope and think the last few months have finally caught up with me but I'm due back to work on Monday and now am unsure as what to do. I work at a university, cleaning student accomodation, o the joy lol but this time of year is our busiest as the students have left and we have to prepare all the houses for other visitors to move in over the summer for conferences ect and it's been pretty manic, they gave me 5 casual workers who I now have to train, supervise and check their work ect and it's really taken it's toll on me. I only work 6 hrs a day but it's quite physical, cleaning for 6 hrs straight with only a 15 minute break.

My neuro has said how important it is to remain working for my emotional and physical well being and I totally get this but I'm not sure if I should be looking for a less physically demanding job in the future, my employers are not yet aware of my condition which is another worry hanging over me and I'm not sure I'm ready to go back yet but on the other hand I don't know wether I should just get on with it and hope for the best.

I'm full of mixed emotions right now, my head is all over the place and apologies for rambling on !

Hope everyone has a good day :)

 

Ness x

Hi Ness, and commiserations on the diagnosis. Still, definitely better to know and now you can get help to fight it!

As far as DMDs go, check out the msdecisions website. It is an excellent source of objective info. It will speed things up if you have already chosen one when you see the MS nurse (there's a lot of paperwork so the sooner she/he starts, the better).

As far as work goes, I think it's important that you do what works for you. Now you have a diagnosis, you are automatically covered by the Equality Act. That means that your employers are legally bound to make reasonable adjustments to allow you to stay in work. So perhaps it would be possible for you to do more of a desk job? Change your hours? Do more of a supervisory job without the cleaning? Would only doing ground floor rooms help? Etc. If your employer is unhelpful, then you can ask Access To Work to get involved.

Take your time though. Dealing with an MS diagnosis, even when expected, is not easy.

One day at a time.

Karen x

I'm so sorry Ness that you've been diagnosed with MS but at least you are the end of that horrible limboland journey and can start to come to terms with what this means for you.

You need time to come to terms with your diagnosis and plan. I think if you're not ffeling up to work with your symptoms and everything see if your GP will give you a few more weeks off.

Try and let your manager know about the situation. Is there anything they can do to support you in your job. Reduced hours and build up from there or more breaks etc.

Have a think about what other things are feesible for you to do as job. That's not to say you can't back to your old job with a bit of help and support.

Take things one step at a time. Even though you've suspected having MS for a long time being told does make it more final and I'm sure there's going to be lots of questions and scenario's going through your mind.

Good luck.

Reemz

X

 

Hi Ness, sorry to hear your new, on other hand, it is better to know. Once you get over initial shock it's much easier knowing what's causing the symptoms and not feeling like you're going mad, and of course other people believing you makes a huge difference. 

As far as the job goes, can't improve on Karen's excellent advice. Talk to your employers and see what can be changed. 

In meantime, take the news one day at a time. It will go in stages, you'll get used to it and then suddenly have another 'OMG I've got MS' moment. Just go with it. It gets easier.

Take care,

Pat x happy2

Karen, Reemz and Pat thanks so much for all of your great advice and comments I will certainly be taking it on board.

I feel a little more positive this morning after sleeping for most of yesterday and my gp is due to phone me this morning so will see if he will give me another cpl of weeks just so I can adjust / get my head around it all, though I'm sure I will get a few of those OMG moments !

I have checked out the ms decisions site, it's alot to take in having to choose 1 of the 4 .. hope I choose the right 1 for me ..

And Reemz I have been following your story, I feel extremely lucky that my dx was so quick and straightforward and really hope you get some answers soon.

Not sure how I would have got through the last few months without this site and the fantastic ppl who offer advice, support and all the knowledge I have gained from reading through the posts, I'm so grateful, thanks again.

 

Ness x