<p><strong>I see specialists but I still don't know what is wrong....</strong></p><p>Hello!<br />I don’t know if anyone is going to see this but I’m losing hope. I have seen some specialists but I still don’t know what is wrong with me. It all started a few years ago in grad school. I started to feel sick every once in awhile but I blamed it on my migraines and uterine fibroids. but now it's like is it my brain? my hormones? what is it?!</p><p>Out of nowhere, I started having bad ear aches and an ENT doctor told me I might have a jaw issue, called TMJ and referred me to a specialist. So, I started getting treated for that. Later, I had bad pelvic pain and was told my uterine fibroids were huge and that I had to get a surgery done to remove them so I got a robotic myomectomy+endometriosis was found.</p><p>Two years after that, I woke up one morning with an intense neck pain. A few days later, I woke up with this numbness that started with my fingers and radiated all the way up to my face (half of my body). I was able to move that side but it was completely numb for a few minutes followed by an intense muscle pain, headaches, and chills that lasted for hours.</p><p>That incident used to happen randomly and on any given day but always in the morning, in bed, minutes upon opening my eyes. The episodes kept happening without a warning but later progressed into visual disturbances and sparkles. There were moments where I’d lay in bed and my vision used to tunnel and almost close up. That is when I used to quickly sit up for the tunneling to disappear. My vision used to tunnel every time I stood up and with a lot of other disturbances. I also started to not be able to hear well every time I’d turn my head. My head was constantly in pain, I used to feel this insane pressure in my head and nose, like it is about to explode or as if someone was filling it with air or water.</p><p>It did not stop there, one time, I woke up one morning and half of my face went numb and I couldn’t feel or move it, it was just stuck for a few minutes.</p><p>After seeing many doctors during COVID. I was told my optic nerves were swollen and I had something called pseudotumor cerebri and possibly migraine aura or hemiplegic migraines. I was prescribed Diamox and Emgality. They both helped me in a way but I’m still feeling ill and experiencing symptoms that doctors aren’t sure what they are. There are times when they ask me to go back to my primary care doctor which is a total waste of time because they want to help but they are not sure how to as they’re not specialists themselves and have referred me to specialists. I’m at lost…</p><p>I’m currently experiencing a constant pain in my right shoulder blade, facial parasethias, or pinching, I feel warm patches on my skin, sudden red knees, sometimes my joints hurt, the numbness on my hands and face, strange tremors or trembling in the back of my head sometimes face (I don’t see them but feel them), chest pains that come and go, flashes in my peripheral vision every time I blink or move my eyes from side to side.</p><p>Is this some sort of an auto immune disease or a hormonal imbalance or something that have not been discovered? I had an MRI/MRV/MRA and a spinal tab. They have not figured out why I have pseudotumor cerebri and they did not really look other than trying to rule out brain cancer I guess. I wonder if something else have caused pseudotumor cerebri and is not idiopathic; making it a symptom of something else instead of the final diagnosis. Does Mayo Clinic have some sort of a place that one can go to where a doctor can run all sort of tests and figure this out once and for all? instead of going from one specialist to the next and back to a primary care doctor? I’m at lost here and totally losing the will to live…. Any help or input is truly appreciated. Thank you!</p><p>PS: Sorry for any typos or grammatical errors!</p>