Limbo land sucks!!

Well saw neuro this morning nothing new and no dx …I have to go for physiotheray and back to see him in January and by then i will have had all symptoms for a year with no signs of the feelings gong away.

So Limboland i am still here …However many of you have been here longer its frustrating especially the fact that no one else can really see what we are have or how we feel…

So i am saying thank you to you all for the support you have given and provide to many like me at least here you all understand. A special thank you to Karen(Rizzo) who spends so much time helping and supporting people on here you are a Star … So a special thank you to you and i am sure many will agree your help and support is very valuabe…

Okay i have dried my eyes and just going to keep going and taking each day as it comes

Mandy x

Hi Mandy, just to give you some (((((((((((((((((((hugs)))))))))))))))))))

Limbo land is indeed hard, but hang on in there. January isn’t really that long away and take heart that the neuro hasn’t dismissed you and that he wants to see you again. Monitoring symptoms over a period of time is normal.

I’ll ‘second’ your thanks to Karen. Most of us on here have learnt what we know about MS from her brilliant posts.

Take care and remember, one day at a time.

Pat x

Hugs Mandy xx Hopefully the Physio will be of help. I completely agree with you both about Karen, she is fabulous. The way she puts things are so easy and straightforward. She gave me confidence to ‘go get’ the help I need. Sam x

Ditto about Karen - she deserves an MBE

Mandy I started phsyio about 3 weeks ago and the therapist is amazing.

She has improved my mobility already, and had my house assessed to help with aids etc and has made me believe that with dedication and working sensibly around fatigue I can get back the fitness and coordination that I have lost.

I dont have a diagnosis either but she is the most practical person I have met so far… she is making a real difference for me.

Hope that you find it as useful


Thanks for the HUGs Pat and Sam they are appreciated …

Its great how everyone knows how each other feels and the support that we all get from the site.

Yeah Pat my neuro is great he tries to reassure me , he tells me he would love to look me in the eye and say everything will be okay but at this moment in time he cant tell me either way.I read so many posts on here where they get no support from their neuro or GP at least i have that … I also have a direct email to my neuro who says he will always answer me no matter how silly the questions are that i am asking so many on here have to go through their secretary…

Sam my first physio app is on Mod 17th sept so not to long away not sure how they help but not to feel like i am 30years older sorry if i offend but i feel ancient when trying to climb up and down stairs…

Mandy x

ps ((((( HUGS))))) back to you both

Oh me too! I often say to myself, come on legs you can do it!! When I’m half way up the stairs, they start to deeply ache and feel heavy and I feel much much older than I am! Trying to smile more tonight, Ive been crying on and off all day today. Sam xx

oh Sam don’t cry life sucks but everyone on here is so supportive

I went to bed early last night i had such a headache and pain behind my left eye was very sore i feel bad not replying when you were feeling like that.

i hope today you are smiling and feeling better (((((HUGS)))))

Mandy x

So sorry it was a blow out Mandy I hope the physio is helpful at least and January isn’t toooooo far away.

Thank you for the mention. I’m feeling very fragile this morning (sick to my stomach actually :frowning: ) because I’ve upset someone, so it’s really helped to cheer me up a wee bit.

Karen x

Hi Mandy, Please don’t feel bad! I hope your headache is better today and your eye isnt as sore. Things weren’t helped yesterday when I heard Terry Nutkins had died, I adored him growing up :frowning: Sam x

Karen you are only honest and straight with people i am sure you didnt mean to upset anyone…

People should realise honesty is best and not be hurt maybe they took something the wrong way .I can vouch for loads on here without people like you the sight would not be as great a place to come and be with friends alike…

Soo keep your chin up smile and be you that what we all love… this is for you with loads of (((((HUGS)))))

sam i hope you are feeling better today my head has been a little sore hard to explain my daughter keeps telling me its a migrane but its strange and pain coming at different times from different parts…If that makes any sense.

Hi Gillian

I didnt see your reply about physio i am glad its helping you and i am sure it will help me too …I get to thge bottom of the stairs look up an think here we go legs lol i get there only thing is my toilet is downstairs so you can imagine when i get up through the night and get to the top and have to go down onestep at a time making sure my whole foot is on each step so as not to fall ohhhh my what a sight that would be if it ever happens

And Karen another thing you always do more good than bad just reading posts prove that .

Mandy x

Hi Mandy, yeh I know hun…limbo land can feel very lonely.apart from the fact there there are hundreds of us out there.

I often feel like I am on the outside looking in. 14 years and counting for me…

luv Polllx

Hi Karen, I read all the to-ing and fro-ing re your and seahorse`s messages. What a chuff, eh? When all you meant to do was help.

The proof of how much you are thought of here is in great evidence. I too would feel sick if someone took my words the wrong way. Its all but blown over hun. Carry on doing what you do, cos you are a highly valued member of this forum.

much luv Pollx

Hiya Mandy hope today is a good one.

The one thing to remember about the physio…my experience may not be the same for you… I started at the day unit for balance clinic,and while there it doesnt seem too difficult. I came home and slept for hours!!!

Keep up with all the exercises they show you,I walked in last week and came out in a wheelchair, BUT it is definately helping as I can now walk downstairs bending my feet,rather than the flat footed way that means throwing my hips out.

Limbo is a frightful place to be,but as others have said,the wait and see approach is a normal occurence and at least the neuro is looking at helping with the mobility.

Do you find going up or down the stairs the hardest? For me its def the coming down.

Take care


Hi Pip

Today has been a weird day my legs have been feeling very fuzzy if that makes sense from above my knees down to my feet and although i get the hug round my stomach this hasnt been as strong but further down my stomach today… But i am lucky as not really pain just annoying symptoms. But thank you for asking i hope your day has been a good one

I find going up a stuggle but coming down worse it feels like my legs dont want to bend like they used to .

I work nightshift sometimes when i get home my other half has to help me up stairs if he isnt in i hold on and use the banister to help get up…

Only thing about this is when you need the toilet mine is down the stairs so you just hope your not to

You mention bending your feet at present i feel like a baby elephant when walking so heres hoping this will help.

I have physio next Monday and luckily dont work a Monday night so can take it easy afterwards.

Take care

Mandy x