I hope this thread still gets checked. If so, I hope someone has enough time to read what I'm guessing will be a very long post. Thanks in advance!
I'll start by saying I've had problems for over a year, but the recent joint pain and ringing in my ears brought me here today. I actually typed the exact title of this forum into Google, and I'm surprised and excited that I found this! I'll start with my symptoms/back story, and then I'll go into what doctors have found and said.
I've been having neurological issues for about 16 months now. It started with numbness and tingling in my extremities with migraines, blurred vision (trouble focusing my vision, and "shaky" vision), dizziness, and muscle weakness/tremors. All of my symptoms peak if I get hot (physical activity or just being out in the sun). At the peak of the migraines I lost vision in my right eye (vision narrowed and grew dark, saw flashing "shapes"). I haven't lost vision since last February (2012), but I continue to have migraines, usually preceded by sensitivity to sound. My ears are so sensitive that touching any part of my ear shoots pain through the ear and into my neck. Within the past 4 months the ringing in my ears has increased to the point that I can't hear people in other rooms of my house. All of my joints hurt, but my left shoulder and both of my knees get to the point of not wanting to move at all by the end of every day. It's hard for me to eat because I always feel like something is stuck in my throat. Within the past 2 months I have woken up vomiting 4 times. I mean, when I woke up, the vomit was already in my mouth.
My neurologist thinks I have MS, but no MRIs have shown that. He said it can take 5 years or more for MRIs to show the white spots he's looking for. Has anyone else waited that long for a diagnosis?
MRIs did show a growth on my pineal gland. I'm told this is a very common place to have a "growth" in your brain. At first it was measured to be 7mm, but now (a year later) they're measuring it at 8mm. I thought that one millimeter could be a picture clarity issue, but my neurologist said the scanners can measure down to the tenth of a millimeter, so one full millimeter is cause for concern. Even with that, he wants to repeat the MRI in 6 months to see if it grows more, or if white spots show up. Also, my doctor said the cyst is adjacent to the area of the brain that controls body temperature. This could explain why I sweat from eating a bowl of cereal. If it grows more, I'm supposed to see a neurosurgeon.
EEG/QEEG results showed that I have level 3 seizure activity, so I have been put on multiple drugs to combat that, but all of them caused other serious side effects. I am not currently on any seizure medication.
Evoke potentials recently showed something wrong with the nerves between my brain and my right leg. My neurologist thinks this is yet another sign of MS.
My lumbar puncture came back "clear." That was a year ago.
I was diagnosed with sleep apnea. I’ve been using a CPAP machine for a couple months now. I do sleep better, but only after I finally fall asleep, which takes a long time.
A Neuro-ophthalmologist checked for delineation of my optic nerve to support theory that I have MS, but didn’t find anything. That was almost a year ago.
My endocrinologist evaluated the growth on my pineal gland, and isn’t concerned with it but will continue to monitor with MRIs. She said I have hypogonadism and dyslipidemia.
My rheumatologist said I have fibromyalgia.
Does anyone have any thoughts on all of these symptoms? Right now I'm not sure if I have MS, of if I'll be seeing a neurosurgeon in 6 months because of the pineal cyst. My primary care doctor wants me to return to work, so I don't know if he believes me when I say I can't eat, I can't hear, and I have to use crutches to get around my house.
I hate that anyone is going through this, but it is slightly comforting to know I'm not alone.