Last reply 1 month ago
Hello

I’m Sally, I was diagnosed in April this year with rrms. I’m still coming to terms with this scary condition and trying not to over react to changes. This being balance, pins and needles, numbness, moments of feeling really weak and wobbly legged and various niggles. Which have all got worse since diagnosis- is this in my head (pardon the pun 🙂🙃) or is my ms getting worse?
Im on techfedera and got through the the stomach cramps and just have the burning hot flushes once or twice a day which is bearable.
Any advice about symptoms and what to do would be most welcome

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


stripes14
1 month ago

I’ve been on tecfidera for 3 years now and my two mri’s I’ve had have came back with no new lesions.
I’ve been through similar experiences to yourself and it does take a bit of time to get used to but eventually I found myself in a better place through slight exercise and better diet.
I think everyone had different experiences but please try and stick it out and hopefully…..and I know you will…..find yourself in a much better place.
Thoughts are with you x


sally03
1 month ago

Thank you, it is getting easier to deal with. It’s mainly the balance gone wonky for the last week so I’m fearful that I’m having another relapse. I have two lesions in my brain stem so could it be they are flaring up??
In terms of excercise I don’t to bad in that I do running a lot and training for a 10k at the moment. I work full time, gardening, walk the dogs. I do get tired tho!!
My diet isn’t perfect but I’m guessing it isn’t the worst xx


highlander
1 month ago

Hi @sally03
Welcome to the party.
You’ll find no end of help and advice here.
Ask anything you like, bitch, moan and groan.
But best of all laugh and smile and celebrate when you can.
Every one on here tries to help each other out with good advice and knowledge of how things go.
We’ve got our own version of yoda he’s called @stumbled he’ll be along soon if he’s not arrived already.
I’m sure the rest of the more enlightened members will say hi soon.
Welcome again
Keep smiling


highlander
1 month ago

Or even @stumbler


stumbler
1 month ago

Hi @sally03 and welcome. Yes, it’s me, Stumbler, I try not to have stumbled!

Your diagnosis is still fresh in your mind, so go easy on yourself. It can take a year or more to fully accept this diagnosis.

Also, your exercise might be making your symptoms flare up from time to time. There is an aspect of MS called Unhthoff’s Phenomenom (https://www.mstrust.org.uk/a-z/uhthoffs-phenomenon). This basically suggests that an increase in your core body temperature can make your symptoms flare up.

So, you do need to be careful with your exercise.


vixen
1 month ago

Hello @sally03. I’m on Tec and I got diagnosed Jan last year. At first, I could believe that one day you could feel normal and that after diagnosis, it seems that MS is present in its many forms every single day. I don’t know if you were Dx RRMS but it felt to me that my life was one long relapse, with no let up at all. Anyway, trust me, hints do start to normalise and you will start to see patterns. The worse thing is that until you manage to stop it being the no. 1 thing on your mind, it seems to make its presence known all the time. So, focus on recovering properly. To be honest, you are doing great if training in running is still on your agenda, those days are a thing of the past for me! Be kind and patient to yourself, and make sure you make space for your thoughts, feeling and emotions to unfold. Sending lots of support x


grandma
1 month ago

Hi Sally, I’m another of the old codgers also on Tecfidera, have been since Jan, and yes it takes a few weeks but I have no side effects now and I’m 62. As other folks have said you can moan on here, celebrate, anything you like and remember there is no such thing as a silly question with ms😍


vixen
1 month ago

@grandma, I do believe you have called me an old codger! Luckily, I will take it on the chin….. x


stumbler
1 month ago

@vixen , no, it’s me, I’m Spartacus…… 😉


grandma
1 month ago

Dearest Vixen, I wasnt referring to you, you’re a mere whippersnapper at 50, I meant people like Stumbler and I,(though I expect he will mow be offended!) just pure chance you’re post was immediately before mine😂


sally03
1 month ago

Hi all.
Thank you for your responses. It’s does help to ‘talk’ to people who really do understand and can offer advice.
Cheers
Sal x

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.