Hi just wanting to know about other people’s experiences! I was diagnosed last year as having RR after having an episode wen pregnant and following mri scan. I had an mri 14 years ago following an episode and showed likely ms but no diagnosis given. Over the 14 years I’ve experienced strong fatigue and often clumsy and Blurring to eye wen look to the right which has stayed! I had eyes tested iron levels checked etc which showed nothing and never linked to the previous symptoms years ago so just got on with things! . I don’t feel like I have ms as no other flare up but ms nurse says I can have “everyday” symptoms such as clumsy and fatigue which I just think are “me” and “busy life” and recently fell over as just fell forward and nurse says could be because I’d had a temperature which triggered my everyday symptom of “clumsy” and not a further flare up.
Sorry for the long post but just trying to get my head round “ everyday symptoms” as only thought I had ms if had a flare up!? What’s others experiences of this ??
Hi welc123 The way I understand it is that everyone has their ‘normal’ and there’s a baseline level. Over time each relapse drops this baseline down as our brain struggles to fight the condition and function fully as well. The new baseline then becomes your normal and I have symptoms every day that are my normal. You adapt where you can. Hope this helps, there’s a wealth of experience and knowledge on the forum so you are likely to get a better and more scientific answer soon… x
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P.s there is a plethora of triggers that can make my normal symptoms a lot worse such as stress, illness or raised temperature
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hiya
i (think!) i understand the term ‘everyday symptoms’…
maybe it depends on how far down the path that you are and the language used by professionals has become to mean one thing to them and a diff one to us?
for ma heid i have ms every hour of every day. ‘they’ like to define relapses from which there is usually some sort of recovery.
suggestions to stretch are hugely underestimated in my opinion but maybe its only when you are very disabled and struggling that u realise this? i do believe greatly in trying to keep those messages getting through to their destination-even tho it seems pointless (yes, talking from experience here!)
for me to hear the words everyday symptoms are reassuring cos it indicates to me that there is real permanent recognised disability (albeit unwanted)
i may totally wrong of course but thats an explaination that i can get ma heid round.
hope you find your way of coping.
ellie
Hi ellie, I do agree that stretching and keeping those pathways open are essential, “use them or lose them” basically.
Rest of posted deleted, as not to offend
mmm
i have said this before-and am aware it is so wrong-but its down to luck! luck that you meet the right neuro for you. but theres bad builders, chefs, whatever and we expect and deserve/better when it concerns our health but thats not reality. its it awful when its u or someone you love gets gets the numpty to deal with.
i did work in the nhs as a staff nurse for over 11 years-i dont write this totally clueless unfortunately.
i still hope that you and family find your way through this chaos.
ellie
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to the original poster
sorry that that i didnt answer you directly but my reply before re luck is the same, sadly.
i would love to be wrong in my perception of current nhs ‘care’ but…
ellie