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Am I going to be a member of the club?!

Hi everyone. I have been lurking for a while, mainly because I don’t yet have my diagnosis but I’m going a little bit insane at the moment so thought I’d say hi to some others who may understand. My story is a lot like many of yours but essentially I’ve been having numerous neuro symptoms since 2011 when my optician picked up nystagmus. What followed was basically a referral and appointment with a mediocre neurologist who put my symptoms down to an ‘outside chance’ of a previous problem still affecting me. This problem was 30 years ago. So, off I go and carry on with my life, unconvinced that all was okay but struggling to get anyone to believe me. Over the last eight years my symptoms have followed a pattern of lurking in the background pretty much constantly with clear cut episodes of exacerbations where new symptoms appear. I have numbness, tingling etc etc, pretty much a clear and concise list of typically MS symptoms. Anyway, I’ve recently changed GP (after feeling like my previous one did not believe me at all and feeling like a bit of a pain in the arse if I’m honest). The new GP took me seriously INSTANTLY and I got a new referral. I have now seen a brand new neurologist, who was amazing. Again, she took me seriously and has requested many tests. I’ve also just received her letter which basically says she suspects MS but we need to see what the tests say. I’m relieved that I am being taken seriously but terrified that the results of the tests will not show anything. I am only looking for confirmation that my symptoms are not in my head and would honestly rather not be a member of your exclusive club, even though you are all lovely! Will just have to wait for the results and see I guess.

Hello there, as you say the story is a familiar one I have had symptoms on and off since 1993. Glad to here your new GP and Neuro are providing the support that you need.

Stay strong

Hi Toby. Thanks for the reply. Interestingly the MRI I had years ago showed some lesions too so a comparison can be made easily with my new one. Watch and wait for now. Thanks for replying, tell me about your story of you’re able to?

Sometimes a diagnosis of MS is far better than continuing to live in limbo. Having random symptoms that look like MS but aren’t proven to be is really not a happy place to be.

Then again, once you’ve heard the words ‘you have MS’, you can’t ever not have MS again!! It’s that unringing a bell thing.

I’m very glad you now have a GP and a neurologist taking you seriously Anon. Hopefully you’ll have finite answers very quickly.

Sue

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I hope you don’t become a member.

But if you do; we are very lovely.

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Thanks everyone. MRI in two weeks. Then probably an 8 year wait for the results!

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I hope you find out sooner rather than later. Lina

Hi there

My history is as follows

I started with symptoms such as tingling sensations such as numbness all over my body and other strange sensations like my foot was covered in water, together with headaches general tiredness back in 1993. These symptoms including seeing spots in my vision, especially when looking at a bright white background. Some investigatory neurological tests were undertaken and were inconclusive.

After about a year the symptoms eased so I could carry on with my life as normal. However the symptoms never disappeared completely and occasionally worsened, the last time this happened prior to today was in 1996.

My old symptoms flared up again in Jan this year including problems with concentration / cog fog / fumbling for words. So I consulted my GP and got referred to a Neuro and have had an 'head only’ MRI which shows ‘disproportionate degree of cerebral atrophy, however no focal neurological abnormality’.

My next appointment with my neuro is in Feb.

Kind regards

waiting is ALWAYS the worst time…think happy thoughts

Thanks all. I’ve had symptoms for the last nine weeks which have now largely gone away. Will let you know what the MRI says. Hope everyone is having a nice day x

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Good luck for February :slight_smile:

Good luck. Have you been offered a lumbar puncture? You might also get asked to have an ‘evoked potentials’ test which can highlight damage to your nerves.

Thank you. The LP is the next step if the MRI shows inflammation. It’s such a shame that it’s the waiting time for appointments and reading of the results takes so much time - I imagine if your symptoms were much more acute and you were admitted then you could essentially get diagnosed in much less time but hey ho. What will be will be and we are so lucky to have the NHS.

I am glad that you are being taken seriously - that is such a tonic in itself, isn’t it? Whatever the tests find or don’t find, you won’t be one bit sicker or weller than you were before you had them. But if there’s something to be discovered, at least you’ll know. There are people who are happier leaving their stones unturned, but I’m not one of them, and it sounds as though you aren’t either. Good luck with it all.

A

Thanks alison100,for me, knowledge is power!!

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Thanks, best wishes to you as well

MRI happened yesterday and now only a short wait for the results according to the imaging chap. Let’s wait and see.