Forum

where is everyone?

Email your problems to webteam@mssociety.org.uk and hopefully it will be sorted soon

Phew!! you have to type fast then edit, otherwise post may not get published

It is poor at moment, staying with shift.ms good forum, well controlled with staff that communicate.

I think that you can blame the upgrade in the first instance.

There is a caveat to this in that I missed the message about logging in to change my password.
So the given URL was only good for 24 hours (not much time for someone with MS in the middle of treatment).
So it looked just like the notification of a PM (Why could it not have looked different?).

So the cookie that kept me logged in expired - so now I can read the posts but nothing else.
A little searching comes up with a “change your password” facility.
Some jumping through hoops (This page has expired, Cannot load this page, Form expired, and so on), and I am back in with a new password and all my old PMs are still there.
Wow, I have a total of 127 NEW messages (in less than 48 hours?) and it seems that some of the old messages have been tagged as new at random. OK, so it takes me 10 minutes to clear that lot.

Put it simply - the forum “upgrade” was not well handled.
So I am lucky, I do have about 30 years experience with computers behind me, plus two machines sitting on my desk) and I did have some spare time.
Someone else could have been trying to do the same thing from (say) an iPad, and got very frustrated, very fast, and given up.

But, when all is said and done, this is still the best English speaking MS forum. We may have lost some of the regulars, but there is more going on here than any two of the others put together.

Geoff - who went to post this, and got a “Form Expired” message (“Save your work and reload this page”). Still some kinks in the system?

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Hi Carole,

Like others I’ve had problems logging on. Had to reset password numerous times so stopped looking at the site.

I don’t remember seeing any announcement that they were upgrading site. If we’d known could we have saved our avatars? Or could the admin team have transfered them over?

Quite upset that we’ve lost the avatars as now people have had to change them , most people haven’t got them now, I used to recognise people by their avatars too. I couldn’t find my original one so have found a similar one but it’s just not me… feel like I’ve lost my identity.

Jen x

JUST TRIED TO POST AND GOT THIS MESSAGE…

The form has become outdated. Copy any unsaved work in the form below and then reload this page.

I didn’t take that long to type my message, I’ll cut and paste and see what happens.

AGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH

Hi, I used to log on to the site daily, but haven`t visited as often lately. I must say it has been harded to post/reply. This particular reply is working much better…good!

poll

stewart

ta for reply to my pm. i am still getting same as geoff and goldrat above…

so i appreciate its a bigger prob than just me!

i will practise patience… ellie

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I’m back. Finally got round to finding out how on earth to log in. What a mess.

Heather

I’m guessing the rest of you are all having problems getting on here today. The forum is up but the main web page is down. I have a shortut saved to the forum rather than the main web page which s how I’m accessing it.

I dicided t go on a round the world cruise and talk to people, thought it would be easier and quicker than trying to get on this forum, lol

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hiya

i have been out taking photos for my book! got caught in a heavy shower but i am as high as the proverbial kite cos i have done it!

for u folk that are interested - i still have a few chapters to write but have found someone to type it up for me (its all hand written by my scribe cos i cant hold a pen) have had some good advice re what to do next… the photos are ok-i struggled with shaky hand but am happy with pic i got and for someone that can edit it then will be perfect pic!

i am stuggling to transfer pics from camera to stick thing but i have learnt to ask for help instead of getting upset over something i just cant physically do! i need to think about whether to just get several copies for friends and family or selling it? not sure yet…

ellie

What’s it about ellie, if you don’t mind me asking :slight_smile: Edit-Congratulations BTW!

hi noreen

no prob with u asking! i am very aware of any newbies around so i want to stress what i am about to briefly describe is very rare-in fact i cant find one other person to have experienced anything near similar!

diagnosed 2005. started ldn in 2007. no other treatment until 2013 (long story why not!) all was bumbling along recovering quickly from the many relapses until a huge one in july 2012 which has left me with speech probs, permanent loss of vision in left eye, doubly incontinent, swallowing probs, and right side weakness from which i have not recovered from. so within hours i went from driving/working etc to needing powerchair and carers to help with daily living.

but i am writing about what i have learned in the past 2 years. i have learnt so much about the theory of support available and what happens in reality! i was rmn for 10 yrs so i am familiar with access to whats available within nhs.

we all have a unique tale to tell re our ms-which usually involves many similarities so i dont feel that my tale differs in that way. but i do believe it differs in what has happened so suddenly and permanently for me. its not a ‘poor me’ tale-i have never been like that. it may (i hope!) explain why some of my replies on here refer to keeping mind strong despite body failing! i have had to rethink my whole attitude towards my ms to do this. i have learnt that ‘what ifs’ and guilt trips only eat me up (used to) and how essential it is to keep life simple and in the now. not saying its easy but what is?!

ellie x

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Well done, that is one hell of an accomplishment. I can barely string a sentence together I envy you the ability and commitment to produce a book.

If you manage to get it published keep us informed I’m sure most of us would be interested.

Jan x

Hello again ellie

Your book will be ineresting to read ellie. I’m sure people other than your family and friends would enjoy reading it…I definitely would

I hope it’s been good for you overall, to write about the last two years.

I will keep a look out for your book on amazon

jan

i cant string a sentence together! hence scribe visiting my house weekly for almost a year trying to make sense of my (important!) ramblings!

its been alot of work but been good ‘therapy’ for me such as using mouth/speech and memory amongst other things.

noreen

its been hard recalling just what a state i was in! but in saying that i trust that it will give others hope when all seems so hopeless (i spent days in bed thinking this was it-just waiting on ms to finish me off!) it has affected swallowing which is scary but i have found a way to cope with the spasms/choking feeling.

ellie x

It must have been horriible for you ellie but it will give hope to others, which is why you must publish…some things are just meant to be…publishing your book is one of them

Once again congratulations! see you at the book signing

Ps; Of course, I realise life is still a struggle for you x

Everyone is washing their hair quicker than logging on here!

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I’mlost im 34 and live in the united states Tn to be exact 5/6 years i started feeling not really me, a pain here a pain there staying tired constantly than that started me on what seems like an endless road to get a dx which ive still not got and there is day’s i feel as if i’m dying.It’s not only me feeling the exhaustion of this it is my kid’s and my husband. Ive been told by 3/4 Dr’s that they think or thought i had ms by the symptom’s ive described Ive had the run of mri’s and ct’s but no lesion’s on my brain mri so ive went since 2003 with terrible miagrains and a few back problems and a million new dr;s both hands stay numb and turnlitteraly whitye from the tip of my fingers tomy palms and they stay so cold(i’m just blabbing) the past few days ive had this weird tingiling in my ring finger it feels as if every muscle in my body has just decided to give up and decay and its making me depressed i cant get dressed without feeling like after i get my clothes on im gonna have tosleepfor 3/4 days just to get my strength back my eyes has been doing the funky dance the past few months at 1st it was just double vision every now and than now its double vision trouble seeing far away all the time i swear at times it feels as if it really hurts my skin if you touch it in june of 2010 i had started having trouble walking im clumsy anyway but my clumsiness went to the extrememe lik i would really have to make myself concentrate to walk from my bedroom to my bathroom without falling and breaking my neck well that summer i did fall i fell 10 ft luckily no broken bones but broken pride considering i was setting on a guardrail and turned to get the lighter i dropped and fail down a cliff (well rolled down cartwheels and front hand springs it seemed ) the er done Ct’s and xrays and everything was fine…the other day i was looking at my medical records to see if anything popped out besides the normal degenerative disc disease and it did it says this Mild

sclerosis is seen about the superior anterior margin of C5 with minimal
spurring.

I have central canal stenosis hypertrophic facet changes does what that say mean that this could be Ms or what i dont know why these drs cant figure out whats going on with me im scared i feel as if im losing my mind over the past year or so its ben so bad i can barley write my name my husband has to help me get dressed i have to use a walker im so weak when i walk can someone tell me what to do or help me please im so lost