Optic nerve cupping and raised pressure both eyes

[Julietoolie66]

Rise in pressure in both my eyes and optic nerves cupping . I recently had an mri of head and they found t2 high intensity frontal lobe but neurologist told rheumotologlst if bo symptoms that it did not matter . I reported slightly falling and trouble getting my words out also right leg seemed to be dragging well not dragging kind of flapping. Should I ring my nurse tomorrow . I seem to be having every symptom since being diagnosed. I am under extreme stress at the moment ("daughters dad refused to return her and now asking courts to let her stay with him ) not sure why I put that just explaining type of stress x

[lesleyg]

Hi Julie your neurologist probably is right but it doesn’t hurt to have a second opinion especially if you’re still worried. I’m very sorry for you for the stress you’re under. Lesley

[Frogge]

I had the exact thing you are talking about. Optic nerve cupping and papillodema. I had raised intracranial pressure. They tested by MRI and nothing showed up. Then they did spinal tap. The pressure was VERY high, but not MS. I also did not have brain tumor. They called it pseudo tumor cerebri. Then a couple of days later, they did an angiogram of my brain. When they did, they found blood clots in the veins of my brain. They were deep enough and hiding in places the MRI didn't show them. They put me on Diamox and Coumadin and it saved my vision. This was 15 years ago. Still on Diamox and blood thinners, but I can see! I wonder if this has anything to do with yours. Good luck!

[Ashveer]

Hi, there, my son has ParanchymlNeuro bhecets,meaning lesions on the brainstem left side of brain, about 8 months before Mar. 2017, he woke up with optic nerve atrophy, 47% visual blind spot in left eye for life, as Retina is damaged, due to Branch Artery Occlusion, (not central artery thank god, but a smaller artery - behcets is character of small to medium artries occlusions) - well, about 8 month later, circa Nov. 2017, his left brainstem had lesions, spread...I have read many reports from experts in behcets/eye specialists, that state this, that once there is optic nerve issues, it is a warning sign for neuro behcets...which is exactly what happened to my son....PLEASE GO TO EMERGENCY!....many doctors do not understand the rare diseases...same thing, my son has brainstem lesions, and right side stroke...same...please go to the nearest hospital...basically, the lesions spread from optic nerve to brainstem...

[Julietoolie66]

Thankyou for your replies I do think perhaps I do need to be seen by neurologist about 20 years ago I had something and they said something not quite right but not enough to warrant more investigations. There is also high risk of stroke in my family my father died at 61 and my sister had a stroke when she was 48 . I will ring rheumotologlst tomorrow and insist on being seen . I have headaches now last few weeks but I think I have put it down to crying a lot over my current home situation.i have actually as well weighed myself and have lost 10kg in the last month which seems a little strange as still on steroids. My eyes hurt when I look about and my left eye seems as if the lid is heavy or droopy x blimey I do not know what to do now .thankyou all for the support xxx

[Julietoolie66]

Headache got worse and vision went to hospital they decided was a cluster headache no scans or anything taken x

[Julietoolie66]

Now eyes sore around them . Clear fluid coming down my nose . Head still hurting and really getting fed up now . When I was at the hospital it was like I had a different personality could not talk properly and then could not think of the words . Now I'm scared to say anything as I felt like a hypochondriac and was just stress. Now itching starting again on back and legs . Whole thing just seems silly now have I got to be careful or not aaargh xxx

[saltrock]

Ive just read your post and wondered how you are? I have optic damage and still have headaches with fluid leaking out of nose and was told it's intercranial hypotension. Have you any answers yet?

[Julietoolie66 in reply to saltrock]

No not yet have been referred to hospital but not heard anything yet . It may be the steroids I'm not sure. I have tried now to try not to overthink .my steroids have been upped again so I am assuming the immune suppressants are not working . Because I have been going through a really tough time in my home life I think they are just seeing me as a weirdo lol xx hopefully have appointment with Birmingham behcets centre Nov 19 so maybe I will know then xx hope your ok x

[saltrock in reply to Julietoolie66]

I had to change immunosuppressants as when I reduced the steroids my symptoms kicked in again, mouth ulcers, eye problems, headaches, usual stuff. Thus believing the immunosuppressants were not working. Have got down to where I was before and so far so good on new imminosuppressants.

Hope you get some answers in Nov x

[Julietoolie66]

Thankyou yes I have upped my steroids until then as no let up now from symptoms. Steroids however make me do housework which I normally hate hello . And get angry which before I would cry if I was angry maybe it is better getting angry lol x who knows . I'm due back to work but work in hospital so do I go back so my mental health and socialising better and risk it xx I have making decisions xxx thankyou for your hopeful reply x

[Julietoolie66]

Well missed eye appoinment . Birmingham rang me said it is rare to have behcets in my 50's .well I returned to work at the hospital just before xmas 2 days later pain in hip and knee needed ambulance for gas and air . Finally had an mri and i now have something else rare a complex multiseptated cyst posterior to the pcl xx see surgeons monday xx no pain now but can not feel skin below knee x I have had my covid jab as a nhs employee felt a bit tired but fine now xx my mouth not good down to 13mg steroids..need 2 more teeth out . Before I was 50 I had no fillings or teeth out xc hope your all well x and hope this nee year is better for us all x