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does this sound like RRMS or PPMS?

Hi. So I have done a lot of research into MS since I started getting weird symptoms. I know anything that google could possible tell me about this disease. I am currently undiagnosed, my appointment with my neurologist is next week. However with all the symptoms I have I’m certain I have MS. I’m just unsure as to which one. I personally think it’s looking more like PPMS (I know this is much less common and normally occurs in people much older than me, but that is not always the case) so It would be helpful if you could read my symptoms and their pattern and tell me from your experience of the disease which one it looks like. This is something that is really troubling me and is making me severely depressed so I really need some answers at this point.

so my symptoms started (I think) about 3 months ago. It started with my knee locking up and I was also getting pins and needles. after a few days my legs got extremely painful and weak to the point I couldn’t even walk on them as they were too wobbly. after a few weeks of this, it stopped. But I was still getting pins and needles, muscle spasms started to develop too along with pain in my lower back that would radiate down my buttox and leg. I was getting numbness along with the pins and needles that would last a few seconds/minutes then go away. I noticed my hands starting to tremor if I lift it up, the same with my legs. I would also sometimes get bad pain when sitting even for a short amount of time. In the last 2 or 3 weeks I’ve noticed double vision in my side vision but only when I’m led down, however occasionally when I wake up it’ll be double in my central vision for a few minutes then clear up. I occasionally get blurry vision too. All of this has been within the past 3 months, currently I am still experiencing the pins and needles/numbsss, tremor, muscle twitches (though not as frequent) and pain radiating from my lower back down into my buttox and leg) I also get some headaches and the double vision when led down has remained persistent too.

I am very confused about this because these symptoms seem to come and go, nothing is constant except the double vision which only started 2 weeks ago and is only when I’m led down, and also the tremor if I lift my hand up. I know with RRMS It seems to be a distinct and suddenly attack such as a whole limb going numb for a few weeks or optic neuritis. Whereas mine seems to be many symptoms that come and go throughout the day as well as new ones appearing then leaving. So does this mean it’s PPMS?

I know this is a lot to read and I haven’t managed to explain it too well but I am extremely worried about this so any comments would be great. thank you

Hello Georgia

First of all, you should be aware that MS shares symptoms with many other diagnoses. So while you are certain it’s MS, it is really not a certainty. We also may share some symptoms with each other, but don’t automatically mirror one another’s disease.

Having said this though, to me it doesn’t sound like MS. Symptoms that come and go aren’t typical of any variety of MS. For relapsing remitting MS, symptoms will come and stay for weeks or months before remitting, either partially or comp. For progressive MS (primary or secondary), symptoms will come and not tend to go at all. So the on/off nature of what you’re experiencing doesn’t sound MSey to me.

But, what you need to remember is that when you see the neurologist, s/he won’t be looking to rule MS in or out. S/he will be taking a history from you are then examining you to see firstly whether there appears to be a neurological condition, and then working out what condition it might be. Only then will s/he refer you for neurological tests to establish exactly what’s going on with you.

Just supposing you were ultimately diagnosed with MS, it would be some way down the line before determining whether you were on the relapsing continuum or the progressive type.

So trying to figure out which variety of a single neurological disorder you have is rather putting the cart before the horse.

Instead, why not start writing some notes for the neurologist. Similar to what you’ve posted in this thread, detail what you’ve experienced and when. Keep notes of what has fluctuated from the beginning and whether symptoms have improved, and then whether partially or completely.

In the meantime try to stay away from Dr Google, you won’t find answers there, all you’ll do is scare yourself.

Best of luck with the neurologists appointment.

Sue

Thank you for your quick reply. I understand there are many disorders that mimic MS. As I said I’ve done a lot of research into this (I know it’s not the best thing to do but it’s instinct and a lot of us are guilty of it unfortunately) and at first was very open to the possibility of it being something else, perhaps a herniated disk or something like that. but as new symptoms have come about, particularly the double vision, Its become apparent it’s unlikely to be anything else. I have been to an optometrist and she confirmed my eyes are completely fine which I knew anyway as my double vision is binocular, so it’s confirmed it’s to do with my brain 100%. In terms of neurological disorders that involve double vision there aren’t too many and none of which produce all the other symptoms I have been experiencing, so I’m pretty much convinced it is MS at this point. Yes there is of course a possibility that I have 2 different disorders and they’re not related but it’s honestly unlikely. So that’s why I am so convinced before diagnosis.

I also know it’s very difficult to predict which type I would have but as it’s playing on my mind so much anyway I thought I’d put it on here and try and get some insight into whether the pattern of my symptoms fit with either type as there really isn’t much information on it online.

The notes are a good idea though and I’ve actually began to formulate them already, hopefully it’ll help me get some insight into what’s going on quicker.

Thank you again for taking the take to reply and for the well wishes.

Hi,

do you have any update? I’m 22 and worried about MS aswell