a step forward maybe..??

New diagnosis and before diagnosis
1

Hi everyone… not been around for a while… (trying to keep everything pushed out of my mind tbh!!)

I wont repeat myself of whole history here, but basically I’ve had symptoms for 5 years now… still undx’d. Last neuro appt I saw possible MS and ‘evidence of MS although MRI NAD’, as well as spastic paraparesis written in my notes (although neuro told me MS unlikely!)

Anyway… not due to see my neuro until September for a yearly update. (I have clear MRI, and LP, never received my VEP report) Although my symptoms didn’t go away, they have just been mild. However, over the last couple of weeks my eyes keep going blurry (I can’t read when this happens) for about an hour or two a couple of times a day. And my legs (spastic paraparesis) has become a lot more severe, and the jumpiness a lot more frequent… I e-mailed my neuro on wednesday last week (I then received an e-mail back from him asking his secretary for my notes and VEP report, he’d just copied me in the email) and yesterday I got a letter, he has brought my appointment forward to 7th June!! Excellent result!!

Even though I am pleased about this… And think he is being very efficient in bringing my appt forward, do you think there is anything in it?? I am now wondering whether I will finally get a dx?? Or am I clutching at straws??

He must have asked to see me for a reason though don’t you think??

Any thoughts appreciated :slight_smile:

Jules x

2

Jules, neuros will see you faster simply because they feel there may be something which is worrying you for which he can test as theyve still not got enough evidence of what your diagnosis may be.

I wouldnt jump as yet. Ive already been diagnosed yet with symptoms we are sometimes slotted in and more often than not, either speak to ms nurse or wait for months. They look for symptoms which are suggestive of neurological disease which persist, hence different tests.

If your unsure about anything can you not get your gp onside so he/she can maybe fill in some gaps in the meantime?

bren

x

3

Thanks Bren…

GP not helpful, and as this has been going on for 5 years now, I can only wait for the right evidence to appear. It’s just very frustrating, so when a glimpse of a possible diagnosis appears I think I just cling to it!!

x

4

Hi Jules, fingers crossed for you. It does sound as if he’s decided to take another look at you… but that’s all it might be. Try not to hope for too much… which as I write it I know is nonsense as remember only too clearly what it was like to be in limbo.

Hope it goes well,

Pat x