Last reply 11 months ago
Advice please

So I came off my meds, I knew this would lead to some flare ups. I have only ever had two relapses with pain and tingles in between.

Anyway….I get pains in my legs. Sometimes a dull ache, sometimes it feels like I have shin splints. But it only seems to effect me when I lie down in bed and when I first get up….is this common?

Also when ever I have a symptom it is exactly the same on both sides. So right now both my thumbs are tingling and both my legs feel like I have shin splints. Or as an example I could have pain in both ankles that is exactly the same. I always was told MS won’t affect both sides simultaneously? Way before MS was in question I also very temporalily lost sight in BOTH eyes, exactly the same at exactly the same time. I went to hospital for a scan but that came back as completely clear…..oh the days that I was MS free 🙁

So does this all sound normal to anyone else?

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vixen
11 months ago

Hi there, 10 years ago, before diagnosis I had another autoimmune disease called sarcoidosis. One of my symptoms was like a symmetrical short-lasting arthritis. For example, one day I would wake up with stiff thumb joints, the next, stiff ankles. Who knows how and why these things can happen. In my case steroids eventually chased off the disease but last year I got diagnosed with MS. Booooooooo! Sorry that’s not much help but I least I can understand what it feels like for you x


edgarleroy
11 months ago

Why go off meds? There’s some safer, easy to tolerate ones available now. You want to limit the brain damage.


californiadreamin
11 months ago

My wife went numb in both legs at the same time. The neurologist wanted to see her right away because happening at both sides at once means something neurological and not something like a pulled muscle etc.


hollylb10
11 months ago

Well I know it’s neurological as I have MS and that has definitely been confirmed. My worst relapse just affected one eye, that was the only one that wasn’t mirrored on both sides. When people talk about pain I just wondered if it was just one leg for example of one arm, or if they felt it both sides.

I came off meds as there are other ways to manage the disease and I’m fed up of putting chemicals into my body.


stumbler
11 months ago

@hollylb10 , symmetrical symptoms are not unusual in MS.

Damage can be incurred anywhere on our Central Nervous System (CNS), which covers the brain and the spinal chord.

The reason why symptoms are more obvious at night in bed and first thing in the morning is the absence of any sensual distraction. By this, I mean that your brain has no other stimuli to process, so the MS symptoms take centre stage.

Is it normal? Well, one thing I have learnt about MS is that there is no normal! 😉


hollylb10
11 months ago

Thanks that’s the kind of response I was looking for.

The only reason I questioned it was because I always hear people talk about their left or right side – and I’m thinking when I get symptoms it’s both sides. Also when I had the loss of sight in both eyes MS was ruled out and they first thought it was a stroke, hence the scan. But still do this day I have never been given a reason for it, I wondered whether that might have actually been MS x


hollylb10
11 months ago

The first scan I had was a CT scan – would that have picked up lesions?


nutshell88
11 months ago

I’ve had pain in Legs ankles knees and even feet both of them.
I panicked at first because i was at university and it was wuiet disturbing.
That was in 2010.
And still is but i now forget it because it lasted too long but numbness and tingling is rare and it only last couple of minutes.
It usualy happen when i have fizzy drinks for example.
My daignose was because of losing one eye in 2005 but it never returned and ive never been on treatments.

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