Moosemama

[coff33pot]

How did you get on yesterday? Just realised the date :)

what coffee said, hope all's ok

Ooo, me too.

me three!

Oh thank you so much for thinking of me, you are all lovely.

Am so sorry I didn't reply. I've only just seen this thread. Its been a hell of a week here, with ds1 having a major meltdown, complete with self-harming and suicide threats, my appointment, lots of school stuff for me to attend for both boys, cupcakes to bake and decorate for their Christmas parties and having to redo ds1's parental advice, as the lovely LEA have changed the form - including the slant of the questions and some new ones thrown in for good measure - since I started typing it back in the Spring and I did't find out until they sent their response to my initial request for SA .

Not been to bed much before 2.00 am all week and feel positive sick with exhaustion. Thank goodness its finally the holidays.

Anyway, back to your question ..

The mri showed more lesions, of a similar type to last time - but as the idiotic NHS have burned the films from my previous mri they couldn't do a side by side comparison. They do have the written records though and felt it warranted further investigation.

The consultant has spoken with two specialists in mri analysis from different hospitals and basically they are considering MS at the moment, but if it is, I'm not a typical case. Apparently I have a lot of the symptoms and my history - plus the neuro/cognitive problems I have developed, are all suggesive of it, but not in the typical pattern, although it can present is vastly different ways for different people.

I have to go for a lumbar puncture in January, plus some other tests I have forgotten the name of that trace the speed of nerve messages from your feet, hands and eyes to the brain.

The appointment was a whopping 50 minutes long, she took some more of my medical history regarding what have always been thought of as ME crisis episodes and went from 'I would like you to have these tests, but you don't have to decide today' at the start of the appointment, to 'I am going to book you in for the tests today' by the end.

So, we are not really any closer to a dx. Even the results of the tests can't give a definitive yes or no to MS, but if certain markers are absent from both my cerebral fluid and blood, then it means its highly unlikely.

I did ask what would be their next move if that happened and she said that my symptoms and brain lesions are concerning and obviously have a cause, but we would have eliminated the most worrying possibilities and she may decide at that point to assume its CFS/ME related and not take it any further - unless of course the tests throw up more questions that require further investigation.

Not really had time to process it all, so am not sure how I feel about it all yet.

I do know that I am not at all happy that the lumbar puncture is done on an in-patient basis and you have to be ready to go in straight away on the day they call you. She did make a note of the fact that I have a three children, including a toddler and a child with ASD, so can't just drop evertything at a moment's notice and said I will probably get 24 hours notice maximum, as a result.

Gut feeling at this point, is that its not MS and the probable outcome is going to be a formal ME dx. I did consider refusing the tests, but then decided that I've had these problems the whole of my adult life (first crisis was when I was 19), they've seriously affected my quality of life, jeopardised every job I've ever had and left me pretty much unemployable. So, its probably about time I looked for some answers. Quite apart from anything else, if does turn out to be something that has the potential to be hereditary - we need to know for the dcs.

Shit, moose. Can't believe I'm thinking I hope it's CFS/ME as I wouldn't wish that on anyone. (((hugs))) lovely.

Thanks Ellen.

I was pretty much expecting it to be honest. Have read enough about both illnesses to know they can be very hard to distinguish, especially when the MS is relapsing remitting and slow to progress.

Its come as more of a shock to dh really, as I think he's so used to my symptoms and crises that he'd never considered it could be something progressive. Overheard him on the phone to his best friend last night and it seems he's fretting about it quite a lot.

I'm pretty calm about the whole thing really. Much like it was for ds1's ASD dx, the symptoms are all there anyway, there's no cure for either option and nothing will change if/when I get a dx. I have done a lot to improve and support my general state of health this year and its really helped to reduce my symptoms. This time last year I was on a steep downward slide to a really bad crisis that lasted for months and although I'm truly knackered after the past couple of week's stress and sleep deprivation, I'm not even remotely as bad. So that's given me hope that whatever it is, I'll hopefully be able to manage it for as long as possible without any medical intervention.

hugs moose, doesn't sound a nice experience on top of a rotten week. Hope all the tests go as well as these things can, you know where we are if you need us.

Thanks Ninja.

Sorry I'm not on the Friday Night thread tonight, am just too tired to be sociable really, even electronically.

Have a gin and tonic for me though!

I think that's the least I can do for you moose Try catch up on some of that sleep!

oh moose and here I thought you were going to confirm my Dads suspicions that everyones brain is in their big toe :)

I am sorry you have had such an awful week all round and I do hope your DS has settled back down now bless him. What a traumatic time for you.

I too hope its ME if nothing else at least with ME you can come out the other side as a good friend of mine has done with just the occasional relapse over the years.

For what its worth I also have two friends with MS and they are both doing great the eldest one diagnosed in her 30s and is now 70 and still marching around the shops! :)

Try to take it easy and get some well earned pampering and chocolate xxx

Thanks coff33.

That's what I've been like really. Worst initial attack was when I was 19 and bedridden for months, then relapses of varying severity every now and then over the years, accompanied by lots of doctors stood around scratching their heads at my symptoms.

The consultant said similar about MS. That some people have it for much of their adult life and it barely affects them, others develop it late and can be much more severely affected and still others develop it relatively young and find it progresses/deteriorates extremely quickly. Symptoms and severity are so varied from person to person that there's no reason to believe the pattern of relapses I have been experiencing is changing or accelerating, even if the individual symptoms are new.

Ds is home and dealing with the dcs now and I'm curled up under a duvet perusing the sales on some clothing sites with a view to spending some of my Christmas money.

Am shortly going to grab a quick bite to eat and then head off to bed and sleeeeep!

Words fail me.

oh moose and here I thought you were going to confirm my Dads suspicions that everyones brain is in their big toe

just incase anyone wonders WHY I put that it is a private pm giggle joke we had a while back and I was not being flippant

:( (((hugs)))

no useful things to say, you are in my thoughts and prayers....

Hi Moosemama, FWIW I had a diagnosis of MS about 18months ago and since then have not had any more 'episodes'. Mine started with an episode of optic neuritis 3 years ago, then I had an MRI to see more detail as MS was suspected. Mine has been described as the sensory and neuro one and not the motor skills one (sorry cant remember technical medical terms!) but as your doctor said it varies massively from person to person and doesnt mean I wont get the other in the long term.
I had a lumbar puncture and although not pleasant it was over fairly quickly. The one thing I would advise you is to try and get help for yourself with dcs and the house afterwards if you have the option. My headaches were quite severe. I feel fine now though and only really notice something is up after Ive had a cold or something so its not a life sentence at all. Just keep positive Im 35 btw.

Coff33, I knew what you were referring to.

Thanks for all the kind thoughts everyone.

Anicecupoftea, thank you so much for sharing your dx and experiences with me. I had a lumbar puncture as a child and have had an epidural as an adult, so am hoping I'll be ok with the actual procedure. I don't now if its the same everywhere, but here its done as an in-patient admission and may include a stay overnight depending on what time of day you have it done. Apparently they make you stay totally flat in bed for a day afterwards to minimise 'leakage' and try to reduce the risk of headaches. Have to say, I am really hoping I don't develop the headaches, as I've heard how bad they can be. How long afterwards do you think I'll need someone around to help at home?

My symptoms have mostly been cognitive/neurological, but I also have some tremors and twitches going on, so not sure what that means in terms of potential prognosis if it does turn out to be MS.

Hi, mine was done as an outpatient thing so I was home by the afternoon. Think it sounds much better that they keep you in so there is no temptation to 'be a martyr' as DH puts it! My headaches were quite bad at the beginning but they told me in the hospital that it can take up to a week to subside depending on the person.
I had to keep a dressing on the area they put the needle in but there didn't seem to be much leakage. The main reason for staying flat is to minimise headaches cos apparently as they take fluid from your spine, when you stand up gravity takes over to try and rebalance the fluids.
As far as a dx goes, they told me that lp was the definitive way of dx MS as my blood tests weren't conclusive (had encephalitis a few years back which skewed the results).
Try and rope someone in to help afterwards for as long as they're willing!!

Thanks ANiceCupofTea, it helps to hear it from someone who's been there and done that, iykwim. I read somewhere that the headaches usually appear within the first 48 hours, but can take up to 12 in some people.

I have had encephalitis twice, once as a child - hence the first lumbar puncture and once a few years ago, when I didn't even realise I'd had it until the effects were seen on my first brain scan. I had been very ill on holiday, but thought it was a combination of flu and migraine.

I think dh will be ok to have a couple of days off work and hopefully my Mum may help out during the day for a little while.

The consultant told me that LP is accurate for approximately 80% of people with MS, but that leaves around 20% who have a negative LP result yet still have MS.

I can't help wondering if its worth all the disruption and potential headaches etc just to get a maybe, might be or probably isn't dx. After all, I've lived with it for this long without a dx.

Moose - you need to fight for yourself as hard as you fight for your DS.

And look after yourself as well as you look after him.

If they offered your DS a test with an 80% accuracy rate - would you take it?

We always recommend getting a dx here. It's the same for you as for the kids.

I know, you're right Indigo. Words of sense and wisdom from you as always.

I suppose I'm just having a bit of a wobble about it all and will probably feel better when all the Christmas related stress has passed.

Am going to try not to think about it any more until January now.