Does this sound like MS?: I couldn't possibly... - MS Society

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Does this sound like MS?

Coppernob profile image
17 Replies

I couldn't possibly list all my symptoms but recently the worst ones have been a combination of pain in and around my right eye (that has been present on and off for about 4 years) with dizziness/faintness/nausea. I feel like I'm not fully conscious, that I'm viewing the world through a veil, like a generalised migraine aura - but without the headache. My balance is worse than ever. I can't type or write properly or open bottles, cans etc. I've had 6 falls within about 2.5 years. Fatigue. Weakening legs. Memory is a memory. Concentration shot. Variable bowels. etc etc etc

Have seen one neurologist but we got stuck at the brain MRI as he was unwilling to offer me sufficient sedation. I'm now waiting to see/speak to a neurologist at the Brompton, where I am also treated for fungal allergies.

Meanwhile I'm just about coping with a combo of low dose steroids, steroid nasal spray, and prochlerperazine for nausea.

I know I need a proper diagnosis, but does this sound like it could possibly be MS? I do have 3 other autoimmune conditions as well.

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Coppernob profile image
Coppernob
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17 Replies
Spirit67 profile image
Spirit67

Ask your neurologist to do a spinal tap. Although mine did the MRI, the spinal tap is what told the true story of my symptoms.

Coppernob profile image
Coppernob in reply toSpirit67

No way am I having a spinal tap. MRI is bad enough!

BlanketTime1 profile image
BlanketTime1 in reply toCoppernob

i hear you, but if you're hard to diagnose (like me), you need all the tests they can give you. though the tap is horrible, it's over soon and you'll have more info.

Farmerboy profile image
Farmerboy in reply toCoppernob

I’ve had two MRI for back diagnosis and three for MS confirmation of my diagnosis. My last MRI scan was in a newer scanner where your whole body can pass through the machine the scanner was smaller and quieter.

Fnd_kiwi profile image
Fnd_kiwi in reply toFarmerboy

did you have any read as non specific?

Fnd_kiwi profile image
Fnd_kiwi in reply toCoppernob

i dont blame you.I had one in 2021 and had csf leak for long time after, never again!

Tazmanian profile image
Tazmanian

Almost anything can be M.S. talk to a neurologist Good Luck

BlanketTime1 profile image
BlanketTime1

ah, neuro troubles, don't we all know what that's like.😡 i ran into difficulties b/c no one thought of giving me a spinal mri for years, but when one did, surprise! lesions.

after reading your post i realised the 'headache' i always get after cooking is probably not a headache. i've never had issues with those, the exception being after my covid jabs when i had a headache for a week each time.

when i cook, i get overheated and by the time i'm done my right eye feels as if someone were digging their thumb in it. if i close it, the pain lessens. i just got that it's heat related. duh-doy! (been watching 'community'🤗)

btw i'm in limboland, but i have serious heat issues. i've given myself heat intolerance with the ac blasting twice in the last year where i actually vomited. i'm rambling on a bit, but sometimes if i get mildly overheated, the same eye shuts on its own. also, whether it shuts or hurts, i get extra dizzy and list to one side when walking... so i'd say the eye thing is def related to your neurological issue (keeping in mind i'm not a doctor.😜). good luck on your journey and i hope you find answers soon!🤗

Coppernob profile image
Coppernob in reply toBlanketTime1

Interestingly, my recent symptoms either emerged or worsened after my AZ jabs. That I shouldn't have had anyway because I have a clotting disorder. Unalloyed joy, innit?!

BlanketTime1 profile image
BlanketTime1 in reply toCoppernob

oh no! i didn't know clotting disorders were a reason not to get it! my granny has clotting issues. *sigh, so much info and uncertainty

RichieRm profile image
RichieRm in reply toCoppernob

I had the same after AZ jabs which led to my diagnosis no problems prior…

Fnd_kiwi profile image
Fnd_kiwi in reply toBlanketTime1

how did you get on?Im in limboland too.I have ever possible CNS lesion sign im told by my specialists.I also have severe heat intolerance.I was misdiangosed with FND in past.had it removed, but when I went to see neurologist, they jumped back to it , without completing all MS checks..like 80% so fighting to see another one. I ahve major fatigure ,spasticity, clonus, blurry vision when hot, heavy legs when hot, esp after shower, hyper reflexia, cognitive slowing in heat , urinary frequency and so on....

Orchid5555 profile image
Orchid5555

So sorry to hear you are having so many troubles and thank you for sharing. Have you been to an ophthalmologist for your vision issues? This was the person who got me pointed in the right direction when I was having blurry vision and migraines. Take care :)

Coppernob profile image
Coppernob in reply toOrchid5555

Yes, thank you, I have. I had private double cataract surgery earlier this year. My vision is now 20-20 but I suspect that cataracts may not have been the reason for my blurry vision. There went £6000! Plus new glasses. Hmmmm.....

Fnd_kiwi profile image
Fnd_kiwi in reply toCoppernob

i hear you ! so many glasses prescriptions thats dont work

Lmtroubles profile image
Lmtroubles

Hi, I understand that there are upright/open MRIs available in private centres in the UK. Is your consultant able to refer you to one of those or maybe (if you can afford it) get it done privately and send them the results?

RichieRm profile image
RichieRm

Not unless you pay privately I did so a few years ago

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