Hi! I'm new here (obviously... this is my first post!) But a lot has happened to me in the past two months.
Ohhhhkay, here we go. For the past few years I've had a lot of widespread nerve pain; my primary doctor, bless her, has tried to hard so help me feel better. She sent me to a rheumatologist to make sure it wasn't autoimmune, and during his exam he said "you have neurofibromatosis?" and I asked, "what's that?" He ordered an urgent derm appt for a few days later and that was confirmed. Now I only have maybe 20 around my stomach and back, but he said I immediately need to see ophthalmology, ENT, and neurology. I also have several cafe au lait spots, no learning disabilities either. In the meantime these dizzy spells that I'd been having off and on stepped up, as did the headaches/migraines, even landing me in the ER a few weeks ago because it was so bad I started vomiting. I've had an "ear issue" for the past few years though, but I put it on the backburner because it seemed so small in terms of the other things I had going on. During my follow up with my primary she did the Rinne test and I had zero bone conduction so she said it was a good thing I was seeing the neuro in a few days.
When I saw him, he confirmed the hearing issue and ordered an MRI which I had yesterday. This morning his nurse called me to say "no clear mass" and to follow up with the NF clinic at Johns Hopkins which he had already set up earlier and I'll be going in November. Before then I need to see the ENT in October but now I'm thinking... what is going on?!? No clear mass tells me no tumor... or does it mean "maybe one too small to see"... or, he just doesn't know? It was pretty clear after that first appt that he was sending me to Johns Hopkins for ALL treatment. I had briefly mentioned the connection between mast cells and low vitamin D (which I have) but he said "let Johns Hopkins handle that."
I saw the ophthalmologist on Monday and he confirmed no eye issues: optic nerves clear and no lisch nodules (NF1) and left with a new RX for my glasses.
I continue to have balance issues, fullness in my right ear, horrible tinnitus (it's so piercing today and it hurts) and my headache, which is a daily thing, is on the right side of my head. But still... my MRI sounds like it was normal.
To my knowledge, no one in my family has NF1 *or* NF2
I'm not the sort of person to sit and just relax until I go to Johns Hopkins and I'm not sure what to do with myself