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Not quite diagnosed

Hi,

I’m hoping someone can advise me please?

7 years ago I started to get unwell and eventually I ended up with a diagnosis of ME.

A year ear later I became even more unwell with a really bad head, shooting pains and even more tired than I was! I ended up collapsing and being taken into hospital. The MRI showed I had some white matter hyper intensities and whilst demyelination was mentioned very briefly I was told some was quite normal and I went on my way.

Over the years I’ve had a number of random illness including vertigo, pain in my eye, pins and needles and fluctuating fatigue and have had so much time off work.

This April I started getting really dizzy, had a bad headache and visual disturbances. I then lost the feeling over part of the left side of my face. I worried about a stroke and took myself into a&e. I ended up getting admitted and eventually they decided it was most likely a migraine and told me to slow down and perhaps cut down my working hours and caffeine. I’ve not been to work since then or drunk caffeine - neither has helped. They booked me in for an MRI just to be sure anyway.

i have now developed trigeminal neuralgia which is, perhaps, the most painful thing I have ever come across. I also keep feeling like something is crawling over my arm. I still have fleeting numbness in my face. The most debilitating thing has to be the dizziness. It’s literally like someone flicks a switch in my head! I am also incredibly tired again.

ive found out the MRI showed an increase in the White matter hyper intensities which suggest a possibility of demyelination.

i have an appointment with the neurologist tomorrow and I’m terrified if im honest. Does anyone know the likelihood of getting a diagnosis and does it sound like it’s possibly Ms to you? I’ve been refusing to google but I know numbness is definitely a symptom as is demyelination if it is that.

thank you!

OK. I’m going to approach this from what seems like an odd angle, but bear with me.

Worst case: suppose you get diagnosed with MS tomorrow, or soon after?

From your description, IF you have it, you’ve had it 7 years at least! I know life hasn’t exactly been a bed of roses during that time, but you’ve coped.

IF you get diagnosed in the near future, the illness won’t know that. You won’t have anything you haven’t had for years already. So try to think of it as knowledge is power.

Diagnosis won’t change whatever it is you have. It might change your insight into it, and what tools you have at your disposal for dealing with it (i.e. drugs).

Think of diagnosis as just the naming ceremony for something you’ve lived with a long time.

It won’t make it behave any differently.

I don’t know if you’ll be diagnosed, to be honest. If you have a demyelinating disease, and there’s MRI proof of new activity, there’s a likelihood you have MS, yes. However, it’s not certain you have demyelinination, and even if you have, there can be other, rarer causes. More tests may still be needed, so you may not come away with answers tomorrow.

But just keep reminding yourself you’ve managed 7 years already. Giving it a name changes nothing.

Let us know how it goes.

Tina

Dizzy, I expect that MS is one of the items on the list of things to be excluded, but that might be a long list. Really, I don’t know and neither will any of us on here, any more than you do.

I hope that you have a good consultation tomorrow and come away with a clear idea of what they think the matter might be. Just stay calm and go in there with an open mind, but don’t be intimidated - the neurologist is there to help you; it’s not a job interview and neither is he/she Jeremy Paxman.

If you (like me) find your brain going to mush under such circs, you might like to say to the neurologist that you would like to be copied in on the letter that he/she will send to your GP and that you would find it helpful if that letter set out in some detail what the neurologist thought about your case.

Good luck.

Alison

Actually that’s a very good point, I hadn’t thought about it like that. Thank you so much.

i am really hoping I can get something stronger to help with the neuralgia whatever he says, so far I’ve only been given amitryptiline and it’s barely touching it.

My gp did mention the possibility of MS, hence I’m here. I’ve been trying to deny the possibility but I know I feel unwell and I have got the point I need an answer.

Hope that makes sense!

Crossed posts - great idea about being copied in! My brain very much goes to mush! Thank you.

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Well today was a complete waste of time.

He didn’t want to listen and I wasn’t even there 10 minutes.

He can’t rule out MS but doesn’t feel it’s worth doing a lumbar puncture yet as I’m apparently too well so it’s less likely. I feel just awful but he really wasn’t taking me seriously and certainly didn’t even ask of how I was.

he seems to think it’s some rare migraine that doesn’t give you headaches but can look like MS on an MRi. He wants to try beta blockers for 6 months before he reviews it. I usually have lowish bp and have asthma so that’ll be interesting…

i asked about the TN and apparently that’s migraine too. Dizziness, numbness and nausea - all migraine. The pins and needles on my other leg - sciatica.

please don’t get me wrong I don’t want MS and if I don’t have it then I don’t want a diagnosis but I did expect to be listened to and possibly even examined. The fatigue - working too hard (I’ve been off and resting for 2 months…)

i really don’t know where to go from here, some understanding of just how awful I feel would’ve been good. :frowning:

I was told I had siatica in oct Hun, then herniated disc, had mri in dec on L5 disc normal, then I got told circulation issues, had Doppler, normal, then I was told I need a pelvis scan to elimate problems there, normal

it was only when my arms went completely dead and I hobbled in Drs looking like a complete zombie one Monday morning she expressed her views thinking it is highly likely it’s Ms, also been tested for thyroid, vitamin b12 deficiency normal, diabetes, normal, Lymmes normal,

please hun, don’t give up x x

and please don’t get down x x