I'm in hospital with a swollen optic nerve

[penelopepipsqueak]

Auto immune disease coming out of my ears

No in hospital for 3 days with a swollen optic nerve on IV steroids .

Given everything so far - I'm thinking I've now got MS

Been having investigations for auto immune issues . Rheumatoid arthritis was the tentative diagnosis and I was waiting to start methotrexate

But I lost sight in right eye Monday . It's continuing so went to optometrist today and got sent straight to hospital.
I need a ct scan , lumbar puncture, MRI on my brain and IV steroids . It's a swollen optic nerve . That's the first symptom of MS. Also auto immune. I've got inflammatory markers in bloods - but thy couldn't tell why - just that I'm having an inflammatory reaction and bloods bear that out .

Anyone relate ?

Yes…in that I avoided this but fully get it. Best of best of luck and huge love as you grapple with it.

Thank you.

I'm scared . I live alone . I'm having IV steroids to try and being the swelling down - will act scan brain scan and lunar puncture give a definitive diagnosis? I e been in limbo 18 bloody months.
I'm a shadow of my former self .

My exh first symptoms of MS were optic neuritis, he went blind driving to work, I was nearly 8 months pregnant with ds. He had the MRI scan first & got a diagnosis of MS. As it was Christmas, he was given oral steroids first, which did nothing & then 3 days iv steroids as an outpatient. On the second day of the iv steroids, his sight came back. He had a rough first 6 months with repeated attacks, then got on a trial for a Disease Mondifying Drug called Rebif1a, which he injected 3 times a week, this slowed his attacks down to one every 14 months, we could mark on the calendar when his next attack would be. You may have only one attack & never have another one, once you have had the MRI, they will know more.

Thanks - it's the weekend so I'm struggling to get the MRI , I'm on IV steroids . Day 2

I'm wondering if mri will show anything if the steroids have kicked in ?

I had swollen optic nerves when pregnant. I had two lumbar punctures and was diagnosed with a condition called Benign Intracranial Hypertension. I ended up on water tablets for a long time to try and reduce the pressure.

I feel for you Op, it's a very scary time. I hope they manage to sort you out soon xx

No experience or advice to offer but sending a handhold. I understand this must be really scary but the positive is that you are in hospital and having tests. I hope you get some results and reassurance soon.

Glad you have steroids. And yes the MRI will show anything there is to be seen, and with that and a lumbar puncture you should get lots of information. I know how scary it is: try to take one day at a time and remind yourself there is so much they can do and at last you are getting treatment.

So mix up with paperwork meant no MRI today. Back tomorrow. More IV steroids and hopefully a dye contrast MRI.

Then follow up with neurologist. Then I'll know what other tests they want .

Cannula had to come out of elbow and it's made a real mess , now got one in hand which is more comfortable.

Had a brain and eye scan today . Results tomorrow. They've extended the iv steroids for another 2 days .

Hopefully some answers tomorrow.

Wishing you the best for today xx

My husband had this and the sight gradually came back.

Did you get some answers @penelopepipsqueak ?

No answer. I'm still blind in right eye .

They're saying MRI clear tho I'd had 3 days high dose IV steroids by time it was done.

I aren't convinced that it isn't MS . I've had long standing balance and coordination issues, jerking muscle spasms, pins and needles.
I've got inflammation markers in bloods . My joints are swollen . I'm no further on tho . Back to opthalmology and neurology next week .

Sorry you don't have any answers .

You might want them to investigate a form of vasculitis called Wegeners disease. My DM had quite a few of your symptoms and she was diagnosed with this. It's very rare so not the go to diagnosis.

I think it was found on an ANCR blood test.

OP this might have already been ruled out for you but I had every symptom you describe other than the swollen optic nerve although I did have intermittent disturbed vision in one eye. Had so many tests inconclusive etc. Turned out I had coeliac disease which is also autoimmune. I had zero stomach symptoms, everything was neurological. Within a month of giving up gluten all my symptoms disappeared. Hope it’s something similar for you x

Look into Polymyalgia that can affect eyes.

If it is MS it's not the end of the world. It seems like it when you are diagnosed. But there are some excellent and effective drug treatments out there now. Thank Goodness for the NHS
. I was diagnosed 12 years ago and still work full time as a nurse on a busy ward. Hope the steroids do the trick for you.

Thank you I've gone gluten free .

I'm trying anything. Been gluten free for a couple of months. . My joints are swelling and painful so thought it was rheumatoid arthritis. But now the eye thing is new and also had steroid injections which should have reduced any inflammation but the eye is new .

I think an MRI will still show lesions I thing. As they leave scars. My early MRI's are lit up like a Christmas tree!

Apparently my MRI was clear so I just don't know

The neurologist showed me my swollen optic nerves

Now they're saying swollen optic discs but i saw the nerve on the OCT scans and it was fat and swollen - the neurologist agreed . I'm so confused.

I do have blackened standout veins on all my swollen joints.

They think they've found out what's wrong - I have tuberculosis which has spread to brain and spinal column.

The only place I can think I've contracted TB is from work , but how long ago I aren't sure - only that I had what was thought to be pneumonia last winter.

Had a lumbar puncture today to confirm . Just waiting results.

Oh god you poor thing! Hope they give you ALL the antibiotics!! Get better soon!!

Bloody hell-poor you!! Hope they hide you some treatment that clears it up pronto.