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Tick box time...

Well here we are guys, tick box time??? What could it possibily be, annual MS Consultant appointment? Yes tomorrow, this will be my 3rd Consultant in as many years, different fiddle same tune. I can hardly contain myselfwaste of timeam I bitter Hey, sorry guys it tends to make me think of what I’ve lost since diagnosis. Chin up, it could be much worse and thank goodness I have my gang. Take care, be safeM

Hey M, good luck with the appointment, I think there’s going to be a certain amount of insult to injury with these things so I hope it’s not too painful (is that the right word for it?!) for you.

Sonia x

Hi M, hope it goes ok tomorrow hon. Don’t forget to ask if there are any PPMS trials coming along! You never know your luck…

Lots of love,

Pat x

good luck for tomorrow. x

Good luck M…hope all goes well. Nina

Cheers guy, for all your good wishes. There are no PPMS trials Pat, I didn’t remember to ask, the Consultant told me there are Secondary ones! BUT - and it hit me as a big BUT they are thinking it may be the same disease! I have always thought that I had MS years before (spells) that I got over. No-one bloody well listenedshe was really nice, first time I’d met her, stressed out and very very busy. Take care, M

Hi M, I think so many of us can say the same. Strange symptoms for many years that just went away and never bad enough to see or consultant… or even a GP.

In fact after initially being dx with anxiety in my 20’s (fatigue, dizziness, trouble swallowing and panic attacks) I also just assumed that many symptoms over the years were anxiety and didn’t bother seeing a GP (but they wouldn’t have done anything anyway).

Glad the neuro was nice M. It makes a huge difference when they don’t treat you like something that just crawled out from under a stone!

I personally think there’s a ‘class’ element to all this. Neuro’s tend to be very middle-class and if we go in as obviously working-class they immediatly assume we are thick and work-shy.

Have a good day hon,

Pat x

PS… on other hand M you could be member of the aristocracy for all I know! Sorry I made huge assumption there…

Pat x

M, that could so be true for me… growing up and way into my 20’s I was a proper sickly pup, I grew up with weekly migraines and whilst I sort of ‘grew out’ of the weekly thing I would often get fatigued etc. I was always just a bit wet really, I would get run down if I took on too much and I would often get sick.

And was so cross to suddenly uncover MS because I thinght I’d got past all that - I started getting fit when I was 35 and overnight things changed, the migraines/headaches disappeared and my periods became regular, I didn’t even get colds, I felt pretty good til about a year or two ago, muscular, fit and with an apparently with a good immune system… then about 20 months ago I developed some gastro problems and lost weight. I blamed that for the spasticity etc. thinking I was a bit shivery as I weighted too little, I blamed my walking problems on an old foot injury… I didn’t even get diagnosed via a normal route!

I fell – went to osteopath to keep up with fitness classes I taught – osteo said MRI needed and wrote to GP – GP referred to spinal unit – spinal unit referred me to neuro after MRI – quit classes (well, took a break that I never went back from) and walking got so much worse, eveything started to crumble! – Found out likely PPMS on my 43rd birthday.

I do wonder if PPMS/SPMS is the same thing, hmmmm.

ps. That sounds really bitter, I’m NOT that bitter honest, but bit of a shocker when I thought I was in such good shape and felt pretty invincible if I’m honest!

Sonia x

Interesting Sonia… esp that you say ‘I didn’t even get colds’…

That would seem like a healthy immune system but it is not so. Healthy people get colds, flu etc and then their healthy immune systems fights the virus and they get better.

Many people with MS (inc myself) never ever get colds etc because our immune systems are much too active… continually fighting the MS which it thinks is a foreign body… so viruses don’t stand a chance.

A lot of the symptoms we have like fatigue are because our immune systems are hyperactive. I often get feverish at night and I think it’s the same cause.

So it seems to me your immune system was probably compromised when you thought you were fit and healthy.

Pat x

That’s really interesting Pat. Like you Sonia I don’t seem to get colds any more, despite my darling daughter generously bringing them home with every change in the weather. I also saw it as a bonus, a great immune system but now you’ve got me wondering if it’d be better if I caught them.

Listening to her sniffle and cough right now though makes me very reluctant to share her misery. Teenage girls get man flu in my experience, it’s not limited to the male gender. Please get me out of here!

It’s crazy isn’t it!

I think the last time I was laid low actually was with swine flu - lucky me! I was commuting to London at the time and it hit me the day they opened the special helpline, that’s literally 3 days of my life that I’ll never get back but the Tamiflu did kick it into touch quite speedily - the last bad cold I had was about 6 or 7 years ago though.

It’s definitely food for thought

Sonia x

twin-set and pearls, Patwithout the pearls OR the twin-set! I like to think that I encourage/force them to relate to me as a human being! I must be feeling a bit wicked this morning (what’s new) ‘I often get feverish at night’ really Pat M

Sorry guys, I couldn’t get it back to normal type! This disease of ours is an enigma, I just wish they could do something to help with repairing the myelin. Is this asking too much? It sounds so simple, hope you have a good weekendM

You have a point M, they seem to be able to rebuild, transplant or now grow everything else, some of which must be more complicated than a silly little sheath, we should enquire! They need to go back to basics!