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Looks Like Limbo May Be About To End ......

Further to my last few posts, today I have received a copy of my LP results from the Neuro Consultant who saw me when admitted in July…

Here is an excerpt from the letter

"There were oligoclonal bands seen in the CSF only which is supportive of an inflammatory explanation for your neurological problems, and suggests that the area of abnormality seen in the spinal cord was due to demyelination.

I will arrange for you to be seen in my next available follow-up appointment so we can see how you are recovering from your symptoms since you have had the intravenous steroids, and then we can decide whether or not further treatment will be required."

This now completes the picture along with MRI results showing old and current lesion on spinal cord.

Appt will be 19th October.

Not sure what to make of this … “this suggests” … well is it or is it not due to demyelination!!

Thoughts anyone?

My fear is that I have actually identified symptoms going back over the course of 25 years which I never even considered of import as they were so short lived, or only happened once or twice, until the last 12 months where symptoms have been, and still are, constant albeit moving around my body!

I don’t quite know how to feel today :frowning: I might be dealing with RRMS, or might be dealing with SPMS??

hi minnie the great majority of people are diagnosed with rrms. i was diagnosed 10 years ago and now i’m scared because i’ve been feeling dreadful recently and am aware that i may now be spms. demyelination is the keyword. if you do get diagnosed you should be put in touch with an ms nurse and offered a DMD. stay strong carole x

I suppose I should start researching the DMDs!

On the bright side, if I do get diagnosed and have had it without knowing for years, then that’s 25 years less I’ve worried about it!!! If I’d suspected all those years ago I might have made different choices - and imagine if I’d never had my beautiful kids because of it!

I do hope your MS hasn’t progressed to spms xx

It’s easy for us to think of you and the other stalwarts as invincible and to admire you because you have already dealt with this for so long, of course you are just as likely to get scared the same as us ‘newbies’

I feel very lucky to have reached the grand old age of 51 without any major ongoing health issues, so what will be, will be is my motto - and I’ll just have to adjust and live with it if it proves to be the case for me

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Hi Minnie

Your last comment is so positive, what a fab attitude- as a fellow newbie, I am trying to stay strong and for the most part I do although it sometimes gets the better of me, usually when I have to much time on my hands to think! I am 47 this year and like you have never had any major health issues. All this has been going on since January, although have had symptoms for 2years plus. I now seem to be shuttling from one appointment to another and find myself saying to my partner ‘how has it come to this’

I am going to adopt your motto and adjust and live with it, if it proves to be the case. Waiting for a referral to specialist demyelination/MS team. Also off to see a neurosurgeon next week as my brain scan showed up something unrelated to all this. Goodness knows what that is I guess I will soon find out.

Stay keeping positive

Mel x

Aww Mel, as if us ladies of a certain age don’t have enough girly crap to deal with ( I am assuming you are a lady, please correct me if I’m wrong!!) already. Not fair is it.

Don’t get me wrong, I had a major wobble earlier today when I saw consultants letter but I think I’m being held together with Sertraline at the moment - I had a huge, life threatening op in February out of the blue and am still getting my head around that to be honest.

It’s not been my greatest year so far, and 14 yr old daughter having panic attacks and acute anxiety issues for other reasons, so she has been forefront in my mind lately.

Plus my Mum struggling as Dad almost certainly developing Dementia but point blank refuses to seek a diagnosis or acknowledge the issue - heartbreaking seeing him disappear down those black holes bit by bit

I’m convincing myself that if I maintain a positive facade I will eventually feel it for real! I don’t really have time for MS so it’ll just have to bu**er off at the moment!

My saving graces are, in no particular order, my hubby; my border collie and my sertraline :smiley: Oh and chocolate.

I hope your neurosurgeon appt has a positive outcome for you, you really don’t need anything else to deal with - sending positive vibes to you xx

Hi Minnie

Yes us ladies of a certain age have far to much crap to deal with.

Work keeps me going as so busy don’t have a lot of time to think about things.

I also find it hard seeing my parents especially my Dad ageing, cancer scares etc. Its tough.

My hubby and kids (all 3 of them) and my sister keep me going and put up with moody wife/mum at times!

I love chocolate too and have 2 daft dogs. So lots going on to keep mind occupied. When a final diagnosis is made I think I will be relived and hopefully will have ‘the lets get on with it attitude’

take care and keep smiling

Mel x