Last reply 1 year ago
Scared Newby

Just wanting a bit of advice..

Not yet diagnosed but mri shows brain and spine lesions…i have follow up in 6-8 weeks.

I am so worried 12 weeks ago in was a happy healthy mum of two youmg children…now i have constant pins amd needles in my lower legs
.i have had to stop clutch control…i had oral steroids a week ago but symptoms still there so assume they are permenant…so scared that i have lost independance amd now worried its a downward slope to a wheelchair instead of the plans to watch and enjoy my children grow up
…any tips/advice

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1 year ago

Hello @anxious, poor you. I’m sure you’ve been trawling through the Internet like mad and increasing your anxiety. This site is great because it’s all first hand experience-based and as a newly diagnosed person I’ve found it so reassuring. I’ll send you a friend request and put you in touch with my sister, also newly diagnosed and who has two children and the same anxieties too! Stay strong!

1 year ago

Anxious 123, i would say don’t despair. If it is MS in some form there is a lot going on in terms of new treatments etc. Focus is on MS in the research world. Look at some other leads on the website. We all support each other. It’s worse in mind than reality and one adjusts. Acceptance is all. Enjoy life. Live for the moment. I have difficulty controlling my clutch foot too but I exercise to keep everything functioning as best as possible. Wait for the diagnosis, stay calm. Above all – keep positive.

1 year ago

Hello @anxious123

Firstly the steroids haven’t had chance to do their stuff yet so don’t write that off as a done deal.

Secondly I’m sending you big virtual hugs because you sound so much like you need them!

My advice would be try really hard not to panic & I realise that’s easy to say but it’s worth a try. 🙂 I remember thinking a lot of the things you’re thinking when I was in your position. It’s not a happy place to be but stress may well agrivate your symptoms so trying to remain calm (ish) is helpful. I made a decision at some point when I was waiting to be diagnosed that I would try not to worry about what ifs because until I was actually told I had ms (which I was pretty certain of) I could enjoy the idea that it might be something else & I wanted to keep my mind set there or as long as I could. I’m not really sure how it worked but it did help, whenever I started to get panicy I would remind myself that I didn’t want to spend the next few weeks worrying only to find out it was something with a simple fix & likewise I didn’t want to spend them worrying before I knew what I was worrying about. Letting my imagination run off into all the terrible things I imagined might happen but probably never will was what I was trying to avoid. I’m not saying it was easy & I’m definitely not saying I stopped worrying completely but I decided I had to hold it together & try & be “sensible” – not usually my strong point 😉

Anyway, nearly 2 years post diagnosis now & everything seems much less big & overwhelming. I’ve read a lot, I’ve asked lots of questions, I’ve been lucky enough to have a great treatment & now I’m just trying to figure out what next….

Oh & please don’t think it’s all down hill till you’re broken hearted in a wheelchair, if you spend enough time reading & chatting on this site you’ll discover plenty of people that have been dealing with Ms for many years without it coming to that & also plenty of people in wheelchairs having fun & enjoying life!

Anyway I’ve blathered on enough, I hope some of what I’ve said might be helpful. Feel free to blather back, or rant or whatever helps at the time. Try & take it easy, enjoy your lovely kids & let those steroids do their stuff!

1 year ago

hi @anxious123
I am in the same position , I have white matter changes on mri and inflammation on lumbar puncture , I have 3 young children and work and since having my lumbar puncture results I have started having the pins and needles in leg and feet ect.
Im due to go back to see my neurologist in few weeks but as off yet I am classed as CIS which can be confusing and annoying.
I did a lot of research into ms when I had seen my neurologist as I was so scared expec with having 3 young children and a lot of the websites don’t help they just scare you , but this website has been great I don’t feel so alone anymore knowing other people are in the same situation as myself and can still carry on with everyday life. The only advice I can give you is to stay off other websites about ms and try this if you need to talk big hugs emma x

1 year ago

Thanks everyone…symptoms really getting me down but reading your msgs has given me some hope…i have got apt through for 2 weeks time so hoping that will assist my mood.

Fingers crossed steroids start to work and symptoms resolve..

1 year ago

Sounds similar to me lass I’m officially diagnosed with three bambinos. No car and hobble round like I constantly need to shite. Not let it get me down tho still giggling you and I are both still here to see the baby’s grow up so crack on with it fight the mother fucker off. And don’t waste time mooping about cross that bridge when you get there and don’t worry about it.give them babys a cuddle.

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