Forum

I may not have MS...but....

New diagnosis and before diagnosis
#1

Hello everyone,

I am a brand new member, and I’m PRE diagnosis for MS. The story is long and complicated (read: I’ve almost convinced myself that maybe I’m a hypochondriac) so I won’t bore you with the details. I found this forum after obsessively searching for other’s diagnosis stories, so I can at least have some idea of what I might be in for.

Recently, I saw my GP after being completely fed up with the altogether random and tricky disappearing and re-appearing ‘symptoms’ that have been happening for over a year now. He did a quick neurological exam and referred me to a neurologist. He’s mentioned the word “MS” at least twice - hence why I’ve done some research. It started with a bought of losing half my sight in one eye, but only briefly.

Anyway, the list of symptoms and history is long and drawn out - I could fill pages and pages - but I won’t. I wanted to say hello and that I’m glad there is a place like this for those of us who are like myself. I’m convinced that I could not possibly have MS, but what my head says doesn’t match what my body is telling me – if that makes sense. I might be in denial. Some days I feel like I’m going crazy or seeking attention without really knowing that I am. Everything is so random and “non-specific” (I think that’s a doctor’s favorite term, by the way!). Please tell me this is normal, and that others have felt like this before finally getting an answer one way or another…

Ta!

#2

Hi Heather and welcome

You’re not going crazy - the ‘not knowing’ is an emotional rollercoaster.

I’m not sure what tests your neuro has already done but there are lots of conditions that can have the same or similar symptoms to ms which would all need to be ruled out, which can sometimes be a drawn out process.

But you have come to the right place, just knowing that there are others who are in the same boat as yourself can be of comfort and there’s always someone around with a listening ear when you need it too.

Debbie xx

#3

Hi heather, welcome to the club of the un-diagnosed!

i`ve been messed about by 13 different neuros, in as many years.

I am now waiting to see a top MS chap in Leeds.

So, are you waiting to see a neuro, or has that already happened?

you`ll probably be sent for an MRI and other tests.

Unless your terst results are crystal clear, it might be a while before you get that diagnosis.

Either way, keep chatting to us here and you`ll find advice, support and friendship.

luv Pollx

#4

Hello Heather and welcome,

Yes MS symptoms come and go and no two people are the same. I wouldn’t say you are in denial as you haven’t yet got a dx, but to you your symptoms are real and others ie: doc’s must believe you. You’ve seen a neuro, have you had any tests done? Unfortunately after seeing the neuro and having test done sometimes the wait for dx can seem endless. Hang in there and you will find out for sure. But no you’re not imagining it.

Take care and keep us posted.

Janet

x

#5

Hello Heather xxx ditto above xxx xxjenxxx

#6

Hi Heather,

I’ve been diagnosed since 1998 - wish I’d found this website when I was in limbo. I ended up going to the local

library and having to read books (hidden in a corner incase anyone I knew saw me). Went through the

list of symptoms going tick,tick, tick,tick. Went to GP and said that I suspected I had MS , had been back and forward with different

symptoms. she said

yes and sent me to neurologist - diagnosis shortly after.

This website won’t cure anyone but it can help people deal with their symptoms and give help and support.

So no, you’re not going mad - just trying to come to terms with what you might or might not have.

Think most people are strangely relieved when they get a diagnosis as it proves it’s not all in their head.

Hope you haven’t got MS but if you do there are lots of people here who understands.

Jen xx

#7

Thanks for the encouragement that it’s not all in my head. I haven’t yet seen the neurologist. I’ve been warned that it can take up to 6 months before you get seen. I’ve received a letter from the neurologist to tell me I’m on the waiting list, but nothing apart from that.

I saw an optometrist this week due to a constant twitchy eye and he mentioned that he wasn’t happy with my eye health, so he had me do some additional tests - something called a visual field test. He wasn’t happy with my right eye, so I was re-tested yesterday morning and I’m wiating on those results. Apparently, if that comes back abnormal, he will also write a letter to the neurologist which should speed up the process of getting an appointment.

Today is one of those “off days” when I just feel terrible and I get impatient for an answer. Tomorrow will be a better day, I’m sure. I just don’t like these days because I have zero tolerance with the kids, and it’s really not fair to them.