Im 28, I’ve had symptoms for years that I thought were just “normal”. Turns out, it’s not normal? Lol So I get dizzy a lot, lose balance while walking and run into door frames. Left side of my body goes numb randomly. My vision gets fuzzy or left side of left eye vision goes black (that one is new). I have stabbing pain in my back, and my neck. I’m sure there’s more but I can’t think right now (oh and my memory is horrible. I can be talking and forget what I’m saying two words in and then stop talking altogether because I forgot I was trying to say something…?) Over the years I’ve asked doctors about it and they’ve either (literally) told me I was stupid and didn’t know what I was talking about, or that it was just in my head. A couple months ago my boyfriend told me it sounded a lot like ms to him, which amazingly I’d never even heard of ms before that, so I asked my doc and she actually took me seriously and got me in to see a neurologist. Neurologist seemed to think it was a big possibility after seeing and talking to me so scheduled MRI. Yesterday was my follow up where he thoroughly confused me… They found one lesion on my brain, and “1 is not sufficient evidence” to say it’s ms, so they’re gonna do another MRI now. If they find another on my spine then they’ll do spinal tap to confirm. My boyfriend was with my at my follow up and even he was confused with my doc because he kept contradicting himself. One min he’s saying we need another to confirm it’s ms and if not then it’s def the beginning of ms. Next min he’s saying it’s low chance of being ms. And then he said something again that made it sound like he believe it IS. What else could have caused a lesion on my brain? And what else would cause my symptoms? Neurologist asked me about migraines but I don’t have them! I rarely have even a small headache!!! My doctors always give me perfect bill of health, my blood tests are all perfect… Please somebody give me input :"( I just want to know what the heck is wrong with me!
Hello
To diagnose MS, there’s something called the McDonald Criteria: McDonald criteria | MS Trust
Essentially it’s a bit confusing, but it says that to be diagnosed, you need to have either 2 or more clinically evident (i.e. as seen by a neurologist) relapses, or two or more lesions on the brain. They call this 'dissemination in space and/or time. This is why they’d be looking to see if you have another lesion or wait until you have another attack.
If however, you have one attack and one lesion, it could be a Clinically Isolated Syndrome. This is not a diagnosis of MS, but could be a precursor to it.
So it seems that the neurologist thinks it might be the start of MS, so will do another MRI and then a lumbar puncture to be certain. But at this point in time, there isn’t the evidence that you have (or indeed have not) got MS or even a CIS.
I do feel for you, it’s a horrible time and place, to be waiting to see whether you have MS. We tend to call it Limboland. And the problem is that until and unless you are diagnosed, you can’t be given any disease modifying drugs.
And the difficulty here is that we can try to explain a few things, or give you links to information, but no one on the forum can tell you whether it sounds like you do or don’t have MS, or indeed what else could be wrong.
Hopefully you won’t have too long to wait for your next MRI. And maybe then you can get some more clarity from the neurologist.
Sue
Thank you @Ssssue. This Is probably a dumb question but as I mentioned in my post, I hadn’t even heard of Ms until a couple months ago… What would be considered an “attack”?
Hi Organikagurl
i am in the exact same position and nearly 2 years down the line with no official diagnosis apart from cis, i was so scared just like you but read through some of the threads on here and see others experiences it really does help, its such a frustrating time but you will get more hardened to it i promise, i too had never really heard much about ms and just as you ask i still don’t know what really qualifies an attack, my doc has just told me " you came with your initial complaint knowing it was not right so go by the same thing" makes sense once the panic lets go a little ![]()
My symptoms are so random. I can be fine and feel great for a couple weeks/months, then I’ll have a couple months where things will be weird (The numbness in my left leg/arm/hand and sometimes face, feeling like I can’t think or put together sentences, running into door lol), which is what my original complaint was. So would those cluster of things be considered the attack then? I just hate not knowing. Adding that to the docs calling me stupid/crazy my whole life… I don’t want to feel crazy anymore. ![]()
A attack = a relapse = a flare or anyone of a load of other terms, is generally something new that affects you for at least 24 hours, or is a repeated occurrence of a previous symptom, again lasting at least 24 hours.
So for example, you have a leg that goes numb, feels pins and needle-y or suffers burning type pain. Or you get double vision, or vertigo, or just a finger that’s gone numb. It could be something you’ve experienced before, but which got better, or something completely new.
Once/if you are diagnosed with MS, if you get a symptom that seems to you to be connected to your nervous system that is new, you could be prescribed high dose steroids. These would have the intention of shortening the time it takes for the symptoms to remit (i.e. get better, either completely or partially). They do this by damping down your immune system, because that is what has caused the attack. Mostly, steroids are used for a relapse that is disabling (i.e. something that might affect your eyesight or your walking) but not for a numb finger!!
Have a look at the MS Trust info about relapses: A-Z of MS | MS Trust
But don’t forget, you don’t have MS until and unless a neurologist has diagnosed it. I’m telling you this stuff, not to reinforce the feeling that you might have MS, but simply to try and demystify some of the terminology.
Sue
I had the burning legs and still do but not as bad over middle to end of last year that was described as a flair ![]()
Okay I think I understand now. And I truly appreciate the information being given. I know I haven’t been diagnosed one way or the other, but in the period of time it takes until my neurologist does tell me a definite, non confusing answer, i wanna learn as much as possible. Thank you again! I’m gonna go check out the links you posted now ![]()