please help..which form of ms do i have?

Ok here’s my story…was dx April 2013…told its rrms but I personally think they don’t no n r monitoring me over the year…the only major relapse I’ve had was urine retention which is how I came to get dx and I’ve had to self catheterise ever since. My other symptoms are pins and needles which come and go,legs spasms/jerking numbness…cold feet…double vision which has only ever lasted an hour but had happened several times in one week…and usually but not always is followed by severe headaches so could be migraine s I no…I’ve fallen several times a year for no reason and am very clumsy,drop things,burn myself all the time…but all these things r kind of a minor problem compared to how much my mobility has got worse since dx.

It feels and has deteriorated slowly little by little over the year. My legs r now so weak and yes I can still walk but only just and I don’t use any aids yet but not because I don’t need them but because I’m not ready yet. I’m only 26 and am an extremely selfconscious person…I lack confidence as it is,care way to much what others think and at the moment will just struggle rather than give in and take some help.I’m sure when I’m ready and cant struggle nemore n finally stop caring so much about others will use help.

Neway legs have got a lot worse and this is where the major worry is…as far as I can see apart from urine retention I have never had a major relapse…yes I’ve had small attack s but nurse/doctor don’t class these as relapses…with me my mobility just seems to be getting worse and worse so does this mean I have ppms /spms as I’ve never really ever had a relapse…? Or could it not be ms atall or something else?Please ne advice or similar experiences would really help me.

Sorry if I’ve rambled.

Xxcoleenxx

Hi Coleen

I can’t help with your type of MS but I am answering your post because I want to respond to a couple of things that you have said about walking aids.

You feel that you are not ready (in your head) to use aids but know deep down that they would help. I want to share something that my daughter said to me years ago about using a wheelchair.

“Mum, not using a wheelchair doesn’t stop you looking disabled. People watch you walking and they just know. You might as well be in a chair and be safe.”

She was absolutely right – struggling to walk draws more attention than a stick, rollator or crutches. I know that you are very young and I’m sure this has a lot to do with it but I think that aids will make you invisible – people will have a lot more to comment on if you fall

We use lots of things to make life easier – vacuum cleaners, microwaves, cars, computers. Honestly aids are no different – its just a way of making life easier. It’s not about “giving in “ to MS (Although I hate that term – you can’t lessen MS with an attitude of mind) its just about getting along.

Jane

Hi Coleen

You are most unlikely to have SPMS, because this only comes after RRMS

What is a relapse? A real good question - generally reckoned to be a substantial worsening of your symptoms for more than 24 hours (and some neuros think that a week should be the minimum).
How bad is a relapse? Depends entirely on you. It could take the form of Optic Neuritis (and you lose some or all vision for a week or two) or it could be just extreme fatigue for a few days. My relapses were bad in the sense that I did not even have the energy to pick up a book. We really are all different.

Your double vision coming and going for a week could be a sign of a relapse, and it sounds like you should be making a point of these to a Neuro. On this basis your Dx of RRMS sounds good.

My first neuro said: " If it lasts for more than 24 hours - make a note of it; if it lasts for more than a week - get on the phone". Maybe you should start keeping a diary of symptoms.

Geoff

hi. Thanks for responses.

wendles- i understand your comments and i no in time i will have to use aids just still comming to terms with dx. I am going to be traveling to ireland in march with my mum and ive enquired into getting help through airport so that should be a big step. I am worried and the judgemental general public though. they can be so cruel :frowning:

Thanks geoff.

My nurse didnt think the double vision sounded like relaspe. I will just have to go through everything with doctor as my main worry at the moment is that ive got the progressive type. Would an MRI scan show which type you have or is this usually based on how your symptons have progressed, so the doctor only really noes once hes monitiored you over the years?

thanks

xx