I’ve been in limbo with my diagnosis now for over two years. It all started with some numbness tingling and burning in feet and right hand. I was extremely tired all the time, dizzy and brain fog. I haven’t had any serious issues but the feeling in my head is the worse like a drunken slow feeling. I had an MRI over two years ago and was found to have several white matter lesions and three juxtacortical. All other tests came back normal so I was told it is possible I could have MS but then again it could be nothing. Since that time I’ve had the numbness come back, burning has spread up to my calf, it does go away but never completely. Over the weekend I’ve had the drunken feeling again, sometimes I stagger, I feel clumsy and awkward and I get told to pull myslef together. If only… I feel I should get another check up but I also feel I would be making a fuss.
Hi Linda, and welcome!
Report it in as a suspicious event - I’m surprised they didn’t ask you to do that if there were any changes. Let them make the decision whether it’s significant or not. You aren’t a neurologist, so it’s not something you should have to decide by yourself.
If they say: “That doesn’t sound enough to be concerned about” - all well and good, nothing lost.
But they may say: “That’s relevant, we’d like you to have another scan.” I certainly don’t think you’ll be accused of “making a fuss”. It’s a lot harder to diagnose if the patient doesn’t tell them about things that happen.
Sorry I mistyped your name - should have been Leyla!
Unfortunately this forum does not allow you to correct once you’ve pressed the Post button.
thanks for your reply. I had been under a lot of stress previously with work (some health and safety issues) and illness in the family. Slowly I’ve been trying to improve my lifestyle and health by eating better and exercise which has helped and I have had more energy than before. I think because my neurologist said my symptoms could have been caused by stress and that if I did have MS it is only mild. I think this is why I think I’m making a fuss once I’m feeling ok again, but also its hard to move on when I’m in limbo.
Hi again Leyla,
MS symptoms do have a tendency to be aggravated by stress, however, there is no evidence stress causes the underlying damage of MS, and it certainly doesn’t cause brain lesions. So whether or not stress is amplifying an existing condition, it’s definitely not the only thing going on, and you’re not “making a fuss”.
I hate to say it, but I also think “mild MS” is a very dangerous and misleading term - even though, not visibly disabled after five years, I could reasonably be said to have it!
I never, ever, refer to my own MS as “mild”. I do say that I’ve been lucky so far, but I don’t use the term “mild”, as I think it’s only mild until it isn’t. You either have MS or you don’t, and there is no such diagnosis as “mild MS”. In particular, most people’s MS is “mild” at the very beginning - it’s quite rare for anyone to be profoundly disabled right from the start, and most people never are, but it takes a brave person to predict how it will go.
There seems to be quite a fashion at the moment (or perhaps it’s just the same two or three neurologists doing it over and over again) for telling patients it’s “mild”, which I suppose is meant to be reassuring. But the flipside is that patients like yourself, who have been told this, feel they shouldn’t have any symptoms, and must be “making a fuss”.
Even “mild MS” - in the sense of not being seriously disabling - isn’t symptom free, and doesn’t mean you’re a drama queen, or imagining things, if you don’t feel well.
I still think report it - it’s relevant.
Now I’m diagnosed, I wouldn’t necessarily bother (though I should really, as it might affect treatment decisions). But if I were still in limbo, I’d definitely advise of any new symptoms, or a resurgence of old symptoms.
It could be what’s known as a relapse, and you need at least one relapse subsequent to the initial episode to get a diagnosis.
So don’t neglect anything that might count.
thank you for your message.
The stress I had at work was mainly caused by overwork and not enough fresh air. I work with Mercury which I did get tested for in case that was the issue. Also we have toxic paints which get heated and intensifies the fumes so I would suffer dizziness and headaches. A lot of the health and safety problems have been sorted out now so I believe I was blaming my health issues on the workplace as I felt ok before I started working there.
The numbness I have had previously has felt like having plasters on my toes and sole of one foot ( same foot never feels there and neurologist had problems getting reaction when scraped?) Clumsiness and grip with right hand. I used to do a lot of drumming and couldn’t keep hold of the drumstick. I have also lost complete feeling in one finger (I have raynauds) but this was a completely different feeling in that everything I touched felt dented. I have suffered the burning in my feet usually after showering or when I’ve been in Spain. I also get a lot of painful spasms that last a few seconds in the same location that goes on for a few days.
All these symptoms along with the drunk, dizzy and unable to think straight come and go but some never completely whether or not I’m at work. Once they’ve gone though I forget about it and think oh that was nothing. I think the worse thing for me is when my heads not right as I don’t feel able to do anything because I can’t think what needs to be done. It’s frustrating as I don’t like being lazy I used to be in the army and loved to go running and doing DIY.
Its really helped talking with with you as I seem to be going through a bad patch at the moment and you’ve made me realise that I shouldn’t just put up with it.
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