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Etty

New, undiagnosed seeking advice. (Diagnosed with Ménière's

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Etty

Hello :)

 

Can anyone give me any advice?

 

I started having neurological symptoms when I was 18 this is 17 years ago. It started with vertigo, blurred vision and painful tingling in my legs and arms - later face too. I also had numbness in different areas on my left side. Cheek, arm, back, leg. I also have hyperacusis which began back then. It would all flare up for a couple of weeks or so. I'd feel so so tired, and wobbly. Or it would be one thing or another. I had an Mri scan at 18 which was normal. I saw a neurologist back then too who's only comment was that my reflexes were 'brisk'. They didn't find anything to be very concerning and sent me home. I've continued to have these symptoms and flare ups ever since. But they did go away almost completely for the best part of 10 years. They have been an annoyance but otherwise I've been able to ignore them.

 

Now for the last few months they have returned with an annoying vengeance. There is nothing that awful about them, I can still walk, I slur my words a bit and I forget words a lot. Even names of people I know really well - which is weird. If it's really bad I have to take time of work, but I still function ok, it just is horrible. Anyway,I had a flare up of it all, but this time I had such a strange feeling in my head that I can't even explain it, it was horrendous tingling but also, an intense sort of of pressure and a cold/pricklyness. This has led to me to the docs as I couldn't sleep.

 

I've since seen an ENT specialist, because the ear and vestibular symptoms point to Ménière's disease. However, I've got no permanent hearing loss. And the other body symptoms are still not explained.

 

A had a recent MRI to check for acoustic neuroma, and I asked for a copy of the report. No acoustic neuroma, and nothing noted to account for my symptoms. But it says 'prominent perivascular spaces noted in basal ganglia and white matter' I've done some research on this and I'm hoping some of you might hence know why I am concerned about this. ...The ENT specialist thinks I probably have a 'Ménière's type of thing', but he would have expected hearing loss by now, so agrees with me that MS could be a concern. He thought that my mri scan doesn't completely rule out MS but neither does it confirm anything.

 

I've had this for so long now, that surely the mri would have shown a lesion if it was MS? But I'm also unconvinced that it is menieres. And, after googling about what my Mri report said - feeling all the more bewildered and In the dark. None of my symptoms are disabling, but they certainly aren't pleasant, and they scare me to death. I don't want to waste NHS resources, but I think I would like to see a neurologist again.

 

Do you think I should raise my concerns about MS with the doctor and get a referral ?

 

Thank you


Edited by Marina
Added paragraph breaks to make it easier to read :-)

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Sleepy
Scully

Hello Etty,

 

Welcome. Sorry for the delay in responding, MS sometimes makes everything takes a back seat unfortunately.

 

From reading your post, if I were in your position. I would definitely ask to be referred back to a neurologist.

 

It may not be MS, but only a neurologist is able to figure out what may be going on.

 

Keep a short diary or bullet point list listing the date a new symptom started, or got worse. And how long each symptom lasted. Keep it short and to the point. And take it along with you when you see the neuro team.

 

In the meantime, stick around and let's see how you get on.

 

Scully

 

 

 


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Etty

Hi Scully

 

Thank you for your reply. That's really helpful advice. I've been feeling quite good the last couple of weeks, so I had decided to wait and see, and if I had another flare up with anything getting worse, then I'd ask to be referred. But the likelyhood is that it will flare up again and then I'll probably wish I had got the referral earlier, so I think I will get an appointment to discuss this with my doctor soon. Will keep you posted, thanks again. E

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