Forum

new to me...

Hi guys

Have you ever heard of Relapsing Primary Progressive M S?

I have not really felt ‘right’ since Nov. 2012, as usual no one listens (MS nurse). I thought I should get an appointment with a Neourologist to discuss what’s going on, usual crap see you 2/4/ 6 weeks. Meantime GP won’t try anything unless it is in writing from my Neorologist. I remember at the begining of this , 2007 learn to grin and bear it, so here we are 2013 and nothing has changed apart from I am more disabled. Exercise and a positive attitudeMy rehabilitation Consultant, really nice guy has suggested when there is ‘a flare up’ try a short course of steriods. Guess what GP wants my MS Consultant to put this in writing

Take care folks, chin up

Hi darling, yes I have heard of Relapsing Progressive MS!!! Apparently it’s only been recently recognised as yet another version of MS. I think it very likely that some people with PPMS might actually be RPMS. So hon it is a possibility???!!!

Honestly it’s ridiculous that GP’s won’t prescribe things without the neuro permission… and can never get to see the damn neuro! It’s like a nightmare. I’m feeling frustrated on your behalf. Oh to have money and go private!!!

My heart goes out to you M… Wish there was something I could do to help and hope (actually I know) that having friendship and support on here is some comfort and solace.

Sending you HUGE (((((((((((((((((((((((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))))))))))))))))))))))))))

Chin up M. But don’t ever think twice about coming here if you need a shoulder to cry on. You are incredibly strong but none of us can be strong all the time.

Together we are stronger!!!

Pat xxx

Hi M

Yes, I have heard of this type, perhaps in time more types will be

added, who knows. Do not understand the GP, if he is so worried

without the neuro’s sayso, why doesn’t he ring him?

Sending you some ((((((((((hugs))))))))))) and to let you know

we are all thinking of you.

Pat’s right…together we are stronger.

Pam x

Hi guys

What would I do without you? Probably go madI looked it up RPMS it’s 5% of sufferers, wish I was so lucky with winning money! If I’ve heard nothing from MS Consultant by !st March, I’ll eat my principles and go private. My GP thinks I should be more insistant with the MS nurse. NO someone needs to own the problem, it wasn’t that when the wanted a guinea pig for the 72 mins MRI scan that I did for them! Do I sound angry and frustrated?Steriods could have helped me a little, I know ££££ them.

Sorry guys, thanks for being there chocolates all roundM

Hi M, My MS consultant thinks I may also have RPMS but is not sure, nor am I! I have had steady progression from the start but in 2011, the year I was dx’d, I had a couple of new symptoms, one that came and went again and has not been seen since. So, who knows? I’m keeping an eye on it but seem okayish atm. Hope you get seen soon! Hang in there M. I hope they give you some effective meds to help! Teresa xx

Paroxysmal symptoms come and go (definition of paroxysmal). Thus, you need to make sure you are not talking about the symptoms such as stabbling, itching, insects beneth your skin that typically come and go when you speak of new symptoms that came and went. The paroxysmal ones come again, however. All MSers can have paroxysmal symptoms including us PPMSers.

Many thanks for that, sometimes there is so much going on you forget you can practise trying NOT being dizzy!! Take care, hope everyone has a good weekendM

There’s always… always something going on!

One thing goes and is replaced by something else. On a good day I’m only dealing with 3 or 4 symptoms… lol… the minor ones eg buzzing, vibrations, insects under the skin, itching, twitching, feeling the need to pee all the time… I hardly ever bother to mention those. They’ve become ‘normal’…

Have a good weekend eveyone!

Nobody is normal. There is no such thing as normal… (thought for the day… lol…)

Pat xx

You’d think we would be a miserable buch with all our problemsbut we are not because the are the bestM