Last reply 2 months ago
hate admiting

hello everyone
worst thing for me is talking even to myself about how MS makes me feel
I havent had any sensation of the invader MS untill July I had a symptom

now I noticed recently Im having another invader sensation I hope its just worrying
its like tidal wave in the bottom back of my brain
is it serious?
my appointment with neuro is on september
should i wait for it or get aver my stubborness and have steroids and gylinea
im noton treatmrnt for 14 yrs nearly

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californiadreamin
3 months ago

@nutshell88 is your symptom this time the same as what you had in july or something different?

Its always hard to know what to do with MS, but my opinion is that if your system is working its probably worth thinking carefully before switching. It seemed like was working well for you for a lot of years. However, if things change, then you need to change if you can as well. Clearly if your MS is now active, its worth considering a different strategy. That fact that you have gone so long with so few issues seems like a really good thing. However, I would say again if its active, its worth thinking that something should change. I think Gilenya is a good option to consider for sure and if you are going to do it, no reason to wait.


nutshell88
2 months ago

@californiadreamin
I wasnt able to walk properly on my right foot/leg I recoverd of it
now I feel like a wave or something rushing downward running in the back of my brain right above my neck its not painful it feels weird i could live with it but idk if its a dangerous sign
I fear the side effects 🤐 and i dont want to ruin my mood. you know ms treatments side effects :/


vixen
2 months ago

Hello @nutshell, I remember well from the days when I joined Shift, how positive you were about coping with our condition. Sorry you’re feeling anxious. I would just say to be open with yourself and to new possibilities. We know that stress and anxiety can affect us in ways that we don’t realise. Stay strong, we need you upbeat again as soon as possibly! X


nutshell88
2 months ago

hi @vixen thanks for you positive reply 🌷
im wild temper person hehe I laugh too much shouts if im angry and love rock n roll lol
I hate admitting that something is in me and im not strong smart enough to stop it and know exactly what it is. i adapted MS but it cant get me told i dont accept that :/
thats why i’ve been refusing half measure treatments
but i guess I’ll discuss them and new options with my neuro on Sep.


nutshell88
2 months ago

@vixen I’m aware that you couldnt tolerate the heat in europe
check my avatar its 50c where I am in Sauidi haha and couple of days after I did ICL surgery ” implant contact in my eye ” on july I did MRI both hospitals are in different city 2 hrs away so I’ve been grilled in a hot capsol lol before MRI and contact implant 💔


californiadreamin
2 months ago

@nutshell88

It sounds like you have lhermitte’s sign maybe? My wife had that and it eventually cleared up. How is your fatigue, has it increased recently? All drugs have some side effects. My wife is on Tecfidera and after the initial uncomfortableness she doesnt even notice she is taking it. Hopefully nothing long term bad is happening but I think MS would be doing that anyway.

Anyway sounds like you have some changes going on so its good to have a couple plans. We are all lucky that there are at least some options.


nutshell88
2 months ago

@californiadreamin
lil scary I asked uncle google it responded with a brief answer saying because some nerves are no longer coated with mylin in the neck and spine
but the neuro said my spine is still fine and the sesation is mostly in the bortom half of my head running down and stops eight when it reaches the neck. it happens once or twice a day or maybe none even
I’m not on any drug reason why I sont accept half measure with side effects too my life is 100% fine enough that no one even realised I have MS
I will think seriously about being more brave and cine another solution dont want to make my family misarble even I develop any symptom they are my world

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