I have been undiagnosed for over a year and a half.

Hi my name is Colleen, I am only eighteen years old and I feel like my body is failing me. I was diagnosed with Chronic Migraines at the beginning of all of this, after I went to my eye doctor and a severe eye pain wouldn't go away. I was also experiencing bumps in my eyelids which he thought was part of an allergic reaction as well as floaters, other visual disturbances, and pain when I moved my eyes at all. After that I went to a CHKD emergency room where they told me I had migraines and sent me home after doing an MRI of my head. I continued to get worse and my body continued to fail. My symptoms only increased and the neurologist I began seeing through them had no concern for my other symptoms other than the pain in my eyes which they kept insisting was head pain whilst shoving drugs on me that haven't been working at all. After awhile I started going to the ER monthly and at that point the doctors there insisted I didn't have migraines and I instead had Idiopathic Intracranial Hypertension. They did an ultrasound of my eyes and found my optic nerves to be enlarged and decided to a spinal tap. They tested the pressure of my spinal fluid and found that it was quite low and sent me home. Then I began to have daily urinary incontinence. My PCP asked that I go to the ER after my UTI test came back negative and requested that the doctors there MRI and CT my brain and spinal cord. They did that and again nothing was wrong. I'm being sent to a rheumatologist, urologist, and another neurologist for a second opinion because some of the doctors I've seen seem to think that all of my issues are stemming from something neurological that isn't migraine related yet some of them think it's migraines and something autoimmune working together. But, I just don't know at this point. I'm desperate for answers.

Here are my symptoms:

Severe daily eye pain that worsens when I move my eyes up and down and side to side

Chronic Migraines occurring behind my eyes

Daily urinary incontinence that I cannot feel when occurring

After I pee I get this intense urge that I still need to urinate that hurts very badly and is impossible to ignore

Extreme lightheadedness, this gets worse when I move my neck sometimes or if I look to the side and if I bend down to pick something up

Consistent loose stool/diarrhea

Bleeding out of rectum

Visual disturbances that include: black spots in eyes, floaters, and blurry vision

Daily joint pain all throughout body but especially in back, wrists, neck, knees, and elbows

Bouts of shooting pain throughout the joints that feel like shocks

Muscle twitches just beneath the skin as well as lots of painful muscle cramps

No sexual drive

Extreme fatigue/exhaustion

Difficulty falling asleep due to pain and then eventually I will end up sleeping ten hours and then still taking naps throughout the day

I have issues with either being really hot or really cold, there’s never really an in between

Extreme brain fog/confusion that makes it difficult to focus on tasks such as school work

Becoming more forgetful, I forget words when I’m talking which hasn’t really happened to me before

Balance issues, stumbling, and running into things more often than usual

Lots of tingling and numbness that can sometimes be painful in my hands, feet, and face

Bouts of hiccuping that last longer than previous times

Sometimes have issues drinking and drool out of the left side of my mouth

Bumpy purple rash on feet (this has been diagnosed as granuloma annulare)

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