magsmc 16/04/18
Last reply 1 week ago
Life

Hey everyone. Haven’t been on here in such a long time, but I really need to write how I’m feeling 🙁 I was diagnosed in 2015 and the last few days have been the worst ever, I can only walk a few steps and then I need to sit down.. I. Don’t know if I’m having a relapse.. Its just not normal feeling like this non stop. I can’t do anything, I know people are worst of me than Me, but right now I’m feeling so alone. Thank you if anyone reads this. Just had to get this of my chest because it’s really effecting me.

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peterfrancis
1 week ago

Hi magsmc

I was diagnosed with SPMS before Christmas last year and my initial symptoms were the same as how you describe how you have been over the last few days.
What type of MS is it you have?…. Could be a relapse or possibly you have progressed to SPMS.

Make sure you mention this to your Nurse or Doctor are you due to see them soon?.

Relax as much as possible (easier said than done, I know).


vixen
1 week ago

Hello mags can. Sorry you’re down at the moment and having a hard time. Where are you at with neuro appointments etc, and are you on any meds.

I think all of us sometimes, whatever age, stage and status feel that sense of loneliness which is hard to describe. I think the first two or three years after diagnosis just have to be the toughest. We are all still trying to establish a sense of what constitutes a normal day, and to understand the changing aches, pains and symptoms for which there seems to be no pattern, rhyme or reason. Keep your head up, stay strong and know you’re not alone x


magsmc
1 week ago

Hey peterfrancis thank you for your reply. I’ve RRMS, My ms nurse wants to get bloods done n take it from there, just a waiting game now to see if it’s a relapse..


magsmc
1 week ago

Hey vixen

I’m actually off my tecfidera around 8 months, I’ve been on no medication.. I’m thinking it’s caught up with me now..
I’ve got good family n support but I still Feel like I’m on my own because all I do is complain about my legs or fatigue non stop.
I can’t remember last time I had a normal day.
I’m usually a very positive person and just get on with things.. But today has knocked me for six.
Thank you for your reply really appreciate it 🙂


aimzz
1 week ago

I have never taken any medication for my MS, although that may be a risky choice it is one that I have tried to stick by. I mostly try to eat very healthy, there are great diets that really prevent a lot of the inflammation that I find has effected my legs and general stiffness. I have to say I have been very lucky thus far with my disease, but that never really makes it any easier. I too, always feel like I am complaining, or that people are getting sick of being around me. It makes me extremely insecure at times, but I just have to keep moving forward. i’m also a positive person mostly, and strong, but if there is anything that has really helped me a lot… it’s that sometimes I just feel it out, if its once a week, or once a month, I take one day, a day I like to call a pity day and I just allow myself to be pissed off, to be sad, to cry, to vent, whatever the case may be. People around me are constantly telling me to just be positive, and I know its out of love, but sometimes its really okay to not be positive and feel for what is happening. I dont know if this is helpful at all, but I hope you feel better soon!
Cheers to normal days ahead.


bernadette
1 week ago

really sorry to read that you are feeling so rotten, if you feel you are having a relapse whatever your hospital team can do to advise you may be limited. Even if they suggest steroids you may choose not to take them, there are some side effects and they may only help to speed you through a relapse, If you can bear it you may wait for the flare up / relapse/ whatever the heck it is to burn itself out. Steroids won’t affect the outcome.
Nonetheless you could meet your nurse or Neuro to discuss whether or not you want an alternative DMD to Tecfidera
Taking some control back may help boost your mood. People on this site are good listeners and don’t mind what you describe as complaining. Family and friends however wonderful don’t get it because they haven’t lived it.

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