I honestly don’t know what forum to put this in and so I hope this is the right one.
I guess looking for some information and I suppose someone or someone’s to talk to cause I am dealing with a lot of fear and anxiety at the moment.
I started having pretty frequent dizzy spells starting in 2017. I have heart arrhythmia’s so I was worked up by my cardiologist, neurologist, rheumatologist, endocrinologist you name it the specialist I probably saw them but in the end was left with no answers. About a year ago now I started having headaches that were not my usual ones and issues with my vision. I would see flashing lights, floaters and my vision was distorted, it’s kinda hard to describe not blurry or double but kinda like spacey if that makes sense. Back to the neurologist for a new MRI, some fancy eye test that checks the optic nerves communication with the brain and longer EEG. All normal. Go to the regular eye doctor this past April who says my eyes are healthy. Okay good news. A couple weeks ago I start getting blurry patches in my vision which really scared me, it’s not going away and is getting worse and so I call the eye doctor I saw in April. She speaks to me on the phone and I explain what’s going on. She pulled my file and tells me she thought she saw a posterior detachment (she did not mention this when I was there) but says since I’m having blurry patches she will send me to a specialist. I saw the specialist earlier this week where they put some drops in my eyes and took pictures. The doctor comes in and asks me if anyone ever mentioned pseudo tumor cerebri to me. I tell her no and she proceeds to show me photos of my eyes and explains that I have swelling in the discs of both my eyes also some hemorrhages of a few blood vessels back there. She says pressure on the optic nerve is what causes this. She tells me I need to go back to my neurologist for another MRI (which I just had one on August 25th of this year that was completely normal) an MRA and a lumbar puncture.
I saw my neurologist yesterday. She agrees that it’s possible that I have this but that she would order a new MRI with contrast and a lumbar puncture. She ordered a medication for me that she says will bring down fluid but it had to be ordered so I can’t start it until Monday.
I don’t know anything about this condition but I’m worried about the possibility of an actual brain tumor because of the blurry patches in my vision that’s getting worse by the day and the fact that I do get headaches pretty often but they aren’t always terrible like I have read people with this condition experience. I am also confused why the eye doctor I saw in April didn’t see this swelling in the back is my eyes? She didn’t take photos but she did say she was looking at the back of my eyes, I suppose I’m confused.
Anyone here with similar? Any advice and direction would be greatly appreciated as I really am terrified with the blurry patches in my vision.
For me it has been a long road with so many ailments & some due to lack of care unfortunately, so I lost sight in one eye 2.5 years ago as had meningitis due to a heart infection. I have experienced lots of neuro problems some which were diagnosed as standalones years ago now wondering if they are all connected. The Migraines started in my mid 30s then they left for years & a few years ago started again this time with auras but a brain scan detected nothing....I wasn't sure whether to be glad or not as you do tend to think you are going mad. Recently like you I am also experiencing dizziness which is definitely worrying especially when you read about non epileptic seizures & I live alone. I have lost sensation in both hands from top of both index & little fingers down to the wrists which is horrible sensations to live with being constantly numb in those areas. My writing which has returned to normal was for a while so miniscule but thankfully have a neuro appt at the hospital in January but with all the covid stuff who knows whether that will be cancelled. I have an ant memory as I like to call it but that could be from the meningitis or not. Also, I recently started (not all the time so people don't always believe you as not always present)as I call it my walking/gait is alikened to a t rex & my friend recently stayed so he witnessed it but it still wasn't at it's worst but still glad someone witnessed it. All I can offer is an understanding & send you big hugs.....if you need to talk just drop me a message. This road is not easy. I would like to add as it may or may not have had an impact on it. I gave up meat 6 years ago thinking I was doing the right thing all around to recently discover that it is an important thing to have in your diet with the brain being made up of 60% fat & not all plant stuff is digestible the same as meat & I know this won't apply to everyone but thought I would mention as it will to some & it turns out all folks cannot tolerate veg/vegan diets as we are led to believe. I hope you get some answers soon.X 
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