undiagnosed pt 2

So, we last left off with my move to a different city! It was a super eventful day with a tornado which tore my front tree down, and it just happened to be my birthday, but that's a whole different story for another day!

So, at this time in my life I was already on over 16 different medications for various conditions and I started seeing new specialist, which started changing my meds around and cutting me off of some, thank goodness.

I started in with rheumatology, pain and spine centers, and physical therapist. I finally was diagnosed with Ehlers Danlos Syndrome type 3, which I was born with and have always been hyperflexible. Now I had a reason for a lot of my joint pain finally, but of course no actual fix. I was also diagnosed with fibromyalgia, which causes me a lot of nerve pain, as well as fatigue. I was put on gabapentin, which I gained a TON of weight on and felt worse than before.

During this time I had severe abdominal pain, and decided to go to a local ER who before doing a scan, the Doctor actually told me "if I lost weight I'd feel better" and "there was nothing wrong with me", to which I had finally had enough and spoke up letting her know in fact my weight was from medicine weight gain, due to my health, and she didn't take that well apparently, and instead of giving me my results after my scan she had her nurse come back in after my scan with my discharge papers. No medicine, nothing for pain, just shamed for my weight.

I later saw on my online notes that the scan showed my polyp and that my gallbladder was inflamed.

A couple months later, after even more severe pain I took myself back to an ER, a different one, and was seen in triage fast track, as again they thought it wasn't serious, then was admitted after the scan which showed my gallbladder was inflamed. After a 2nd test they saw it was only functioning at 20%.

This lead to getting my gallbladder out, which then caused a new condition and flared up my IBS x 100!

After my gallbladder surgery I saw more doctors, and had another surgery, this time for trigger finger issues in my pinky finger, likely due to my EDS.

After more doctors and more diagnosis being thrown at me to absorb and live changes being thrown at me as well, (not relevant to this, but I can mention at a later date, and different category!) I started making changes, getting positive about my health, and finding out what was actually wrong with me.

I started seeing my therapist weekly, and attending group meetings as well. I went back to physical therapy, insisting on test at doctors offices, and seeing different doctors in different fields, and 2nd opinions in same fields. Doctor visits became my new normal.

Time went on, and so did my health. My asthma got worse in 2019 and I was put on a steroid inhaler called Breo Ellipta, plus being on the rescue inhaler as well already.

My eyes decided to freak out as well. I have always had bad eyes. My rx is -4.50 and I do not see 20/20 with glasses, yes, I grew up as the child with curly hair, glasses and a retainer. Thanks genetics! But yes, back to the current eye issues... all of a sudden I started seeing double.

I first actually noticed something that scared me more than the double vision. My pupils started changing size and alternating. They were like tonic pupils, but they would switch. When this started up I started seeing double but it would go back to normal after awhile.

After this, the double vision persisted and now it's everyday. I've seen my primary, 2 ophthalmologist, and a neurologist, and had SO MANY blood test, which were mostly normal, other than high homocysteine levels. So, at this current point in time, I am undiagnosed.

I have a fresnel prism on my glasses, which helps me see normal, except when my eyes start the weird tonic pupil switching game. I've been told due to being a zebra with multiple chronic conditions that overlap in symptoms that my case is complex, and that a speciality hospital would be the best option for me. While logistically, it isn't.

So now, I wait. Undiagnosed.

Stay tuned for part 3.

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part 3 will contain my current diagnosis in depth.