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Still waiting but a little more info.....

Hi Again,

i am still waiting to see my neurologist but have a letter to my GP that I have been copied into. I was wondering if anyone could explain what white matter changes next to trigones on both sides means. They have mentioned no definite new focal lesions which I think sounds like it’s neither good or bad news.

I had my LP and am awaiting results. I read that some people have a negative result. I was diagnosed with CIS so with the further evidence of white matter change would you say a diagnosis could be likely even with a negative LP?

What other illnesses could caused what matter changes?

Sorry for the questions but everything just takes so long! My GP cannot understand how I haven’t had a proper diagnosis yet. I don’t even know what a proper diagnosis would mean as it doesn’t really change anything except maybe having a reason for sometimes being in random pain, exhaustion or forgetting a name / conversation when people ask.

Thanks to anyone who has taken the time to read this and hopefully reply

Syd x

hi syd

i’m with your gp on this one.

i don’t understand it either.

the LP shouldn’t count as they aren’t essential for diagnosis.

i read somewhere that dementia causes white matter changes.

better sticking to the original point - ms.

hope you hear soon

carole x

Hello Syd

I honestly don’t know the value of copying patients into letters that even the GP can’t understand. I know it’s all about openness but all the same, it just leaves you still unknowing and frightened even more than you would be anyway!

I don’t understand either, I hope you already have an appointment booked to see the neurologist for more explanation. If you don’t, try phoning his/her secretary and ask when you’ll get an appointment.

Meanwhile, as you’ve found out, up to 20% of people with MS don’t have positive lumbar puncture results. So as Carole said, a LP isn’t required for an MS diagnosis. It’s more about MRI, symptoms and your history. A positive LP, would be additional information for the neuro, but isn’t essential.

The chances are that if you’ve had further symptoms, ie relapses, that you would be diagnosed with MS. But clearly your MRI isn’t showing new lesions so maybe not!!

All you can do is see the neurologist and ask the forthright questions, is it MS? Or is it likely to become MS? Or is there something else it could be?

Good luck

Sue

Thank you for your replies

I do have an appointment but a long wait which they won’t bring forward as it’s already classed as an emergency. It’s still not for a long while.

Although it sounds very odd, I don’t worry about what it could be but am interested in what the implications of whatever diagnosis I eventually receive will mean for my future.

My frustrations lay in the fact that I was diagnosed with extremely likely MS but my neurologist wanted to wait and see if anything else happens. So I waited had 2 more cases of confirmed ON and another big numbness problem plus other niggles all within a year. I returned to the neurologist for my check up and he then decided I have No neurological symptoms and to “learn to live with my partial sight loss” and “deal with the idea it may happen again and get worse”

i left this appointment deflated and upset. My GP was astounded and looked into another neurologist but mine is the MS specialist so no hope to change. I git a CIS diagnosis through the post with no explanation. My GP sent a referral to an MS nurse who was great but again hadn’t been told the whole truth. She hadn’t been informed that I had a CIS diagnosis or that I hand not had an MRI in over 3yrs (she was told it was up to date) I had many other big symptoms at this stage

so immediately referred me for another scan which is where I then got sent for the LP

so my main frustration is that I almost had a diagnosis then it was kind of taken away for absolutely no reason. How can I have extremely likely MS one day and nothing the next it makes no sense.

I was only intrigued as to what else could cause whit matter changes to be prepared what he may suggest next. As for now myself, my GP and my MS nurse are all a little confused

I will update when I finally find out either way x