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Please help me understand....

Oct 10, 2015 11:39 PM

Ok, so I'm new around here. I went to the eye doctor about a month ago and they discovered that my optic nerve in my right eye is swollen. So they sent me to an eye specialist. The eye specialist said that both of my optic nerves are swollen. And said maybe pseudo tumor or papilledema. So they sent me for an MRI, MRA and MRV. I was told a few days ago that I have to go back for another MRV with contrast because there might be something going on in my right sinus cavity. They are sending me for my first lp next Wednesday. Idk what to think. I have never experienced this before. I have been non mobile for a few months now due to severe fibromyalgia and polyarthritis. They think lupus too but can't find it in my blood stream. So please help me understand what is going on with my life! I have no clue what to think any more! And the docs are not saying much! Thanks in advance! PS: I don't even have any symptoms. I mean I get headaches but I have always chalked them up to the fibromyalgia. Thanks again.

Oct 11, 2015 12:35 AM

Hello and welcome,
Sounds like a lot of tests, I don't know a ton about eyes. If you've had ongoing pain for a long time, you might be used to pain. That's how I was, until I started researching various diagnoses. That's when I started learning what to call my symptoms. Before that, it was just "pain all over" or something about fibro. Now, I can day burning, numb, nerve pain vs migraines etc.
Docs still argue about me, and other chronic pain patients. Hopefully these tests can answer some questions.

Oct 11, 2015 10:33 AM

Ashleyc2828, I'm so sorry to hear your struggles. Have you done any research on these diagnosed words they've said? Have you requested a copy of the report where you had the tests done? You have the right to get the report. If I hadn't got my MRI/Myelogram reports I wouldn't have known about a lung nodule or thyroid issues; hypothyroidism. Also look up complications from lupus and polyarthritis. Talk to your doctor and ask them what exactly they are looking for. Be assertive and let them know you need to know rather than be blindsided unexpectedly after all the tests.

My hubby had a veinous occlusion in his left eye (a blood clot) that damaged some of his vision. He had to get a cancer drug injection to stop the damage it was doing. Our daughter has macular degeneration at 27, she's losing sight and is legally blind. I have Sjogrens and my eye doc said I need frequent checks because sjogrens and the Plaquenil treatment can cause issues with the eyes. Having any autoimmune (AI) disease opens me, and you & others to having multiple AI diseases.

I oppose you will find out what you're having to deal with Solon. Knowing is half the battle! You'll be in my thoughts and prayers. 🙏🌼

Oct 11, 2015 5:36 PM

Welcome AshleyC28, I am so sorry you are experiencing such frightening symptom with your eyes. I don't know much about eyes myself but, as Flappsy said, get copies of your reports and scans and do some reading on your diagnosis. Keep a journal of questions to ask the doctor when you are seeing him again. (Take the journal and ask everything you want to know and write down his answers. I also sometimes carry a small digital recorder with me so that I can have the doctors replies in his own voice and if he contradicts his information at any time, you can say to him that he gave you opposite info on another occasion. I wish you all the very best of luck. Remember, be assertive, it's your body and you have a right to ask questions and have all of the diagnosis explained to you in a way you can understand and are comfortable with. I'm sending you {{{{Hugs}}}} and you will be in my thoughts and prayers. Keep us posted as to how you are doing and remember that you are your best advocate. You're never alone, you have all of us whenever you need to chat. Good luck!! 🌻🙏🏻

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