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Waiting to see neurologist

Hi, this is my first time on here, although I have been reading the forum posts for a few weeks now.

I’ve been unwell most of this year, beginning with double vision and dizziness at the end of December. After 6 days of this I went to the GP, and then followed every winter bug in the book - tonsilitis, ear infection, then chest infection. I saw an ENT specialist in March who thought I may have an acoustic neuroma. Eventualy went for the results to be told there was no tumour but there were numerous oval lesions over the brain…it looks like MS. I went back to my GP who read the report and also said it looks like MS. Now I am waiting to see a neurologist…later in July.

The waiting is awful, but I do have a lovely group of supportive friends - one of them has RRMS. My GP is also very ‘tuned in’ to it all as his brother has been recently diagnosed. I suppose my question is - what selse could it be? The double vision went away after day 7, but I still have the dizzy, detached feeling many times a day.

Hi Fennel, very scary time for you… but thank goodness it wasn’t a tumour!

It does look right now as if you could be looking at dx of MS. Shame you have to wait until end of July… which although just over a month away it must feel like a lifetime!

I’m not expert enough to know what else it could be… but for now try to keep open mind… it might not be MS… while also being aware that it might possibly be.

As you have a friend with RRMS you will be aware that MS is not a terminal illness and that life goes on and can still be good. MS is different for every single one of us but for most people fairly normal life continues… work, relationships, sex, babies, holidays, partying etc etc. So certainly not the end of the world.

It might be worth contacting the neuro or neuro secretary and ask if they could contact you if they have a cancellation. Lay it on a bit about how worried you are and you might just get lucky and get an earlier appointment.

For now… plenty of rest, loads of TLC, try to keep stress levels low as poss (not easy I know) and talk about your feelings. It will help.

Best of luck and remember, if it is MS, you will hopefully be able to take some med’s to help with those difficult symptoms.

Pat x

Thank you so much for your reply Pat - it’s such a help when people care!! With regards to babies…I’m hoping not as I’ve just had my 54th birthday!!! I do have 9 Grandchildren though and another on the way!

In that case I think we can count babies out!

Pat x

Hello and welcome :slight_smile:

Whether or not it’s MS depends rather on what your symptoms have been and if you’ve had more than one attack. If you’ve just had the one attack, then it is perfectly possible that you have had a one off thing like ADEM. This is almost indistinguishable from MS on MRI, but ADEM lesions tend to disappear after several months whereas (most) MS lesions tend to remain and increase in number over time. So, assuming a single attack, I think you would be completely correct to question people’s assumption that it’s MS - best to keep an open mind and wait and see what the neuro says.

Karen x

Hi Karen,

I’ve recently been having a numbness around my middle, which I also remember having about 3 years ago. I will of course tell the neurologist this, I think I may start writing a few things down to discuss with him as I have also become SO forgetful over the last few weeks. x