Help. I don't want to overreact.

[annekat]

Since you are mentioning MRIs and the brain, I'll mention that my recent MRI, done because of double vision, came back with everything in the brain and the nerves and muscles around the eye looking pretty normal. The report did mention the extensive erosion of bone in my sinus and nasal area, and the the eye doc hypothesizes that my double vision is related to that, since some of these thin bones form the floor of the orbital cavity. However, he hadn't gotten the pictures yet, and I'm waiting to talk to my ENT after I'm sure that he, too, has the pictures, since he knows more about this erosion and where it is. Also mentioned was opacity in the mastoids and inner ear cavities. Already knew the ears are full of something, not sure about what's in the mastoids, another ENT issue. No pain there to indicate an infection. Maybe fluid, wouldn't know how serious that is or if it could be drained.

Anyway, none of that had to do with your symptoms, Nikki, but an MRI might be in order. However, we don't seem to be hearing that you went to the ER or that you are still feeling bad, so I hope it was something temporary!

[LisaT]

I'm glad that your MRI was at least mostly normal, Anne. The double vision must be really hard to deal with. I had fleeting moments of that today, but I wasn't sure whether it was just headache combined with trying to read and focus further away at various times with my still relatively new progressive lenses... If it continues I'll get it checked out. I hope they figure out what the opacity is on your scan and that it's not something serious.

[annekat]

I'm glad that your MRI was at least mostly normal, Anne. The double vision must be really hard to deal with. I had fleeting moments of that today, but I wasn't sure whether it was just headache combined with trying to read and focus further away at various times with my still relatively new progressive lenses... If it continues I'll get it checked out. I hope they figure out what the opacity is on your scan and that it's not something serious.

Thanks, Lisa. The double vision is mostly manageable; it's worst at distances and when looking through the top part of my field of vision. I have progressive lenses too and remember noticing that when I first got them. You do get used to most of the distortion, or your brain learns to ignore it. As for the opacity, I'm pretty sure in the middle ear it is something like "glue ear", or thickened fluid, and am wondering if it could be the same in the mastoids, which are right behind the ear, I think. An accumulation of years of the ears not draining properly and it now being too late to try tubes or anything. I might have to lean on my ENT to really explain what is going on in there; I suspect that what was described in the report is stuff he already knew about. He is soft spoken and a little vague. Doctors! Arrgh!

[godgirl]

Hey Nikki. Any updates? How are you doing???

Jen

[gilders]

On Nikki's blog she used the past tense when she wrote, "I got fed up that some scary symptoms were a "headache" so I didn't go to them with this." That was 2 days after she started this thread, so I'm hopeful she's now doing well.

I googled "Nikki nicole" to find her blog, but all the results were about a transgender person I retried adding "wegeners" and found it. I wonder if Nikki has tried googling her own name or maybe the transgender person results only appear on UK results?