Diagnostic Years

Diagnostic years are absolutely exhausting! 

A diagnostic year is when new symptoms pop up, or a change is made, which begins a cascading effect. Other, stable, illnesses flare-up, long-suppressed symptoms make an appearance, and my schedule is filled with appointments trying to figure everything out. It is necessary, it is incredible to be able to get the appointments I need, and it is entirely draining. 

In September 2022, a medication change was made. Within weeks, my body swelling was entirely unmanageable, my intestines began bleeding severely, so my diet had to change drastically (potatoes, eggs, and fluids only). We also found that my thyroid was way out of normal, and had to change doses of medication for that. 

I also gained 30lbs within 3 months - some due to swelling, some potentially due to my thyroid, but there's still no answer for the remaining weight gain. (Stress? Age?)

In February 2023, I developed tinnitus and sudden hearing loss in my left ear. I also developed some moderately severe dizziness/vertigo, some nausea, and increased migraines. I was put on steroids for potential Labyrinthitis, but the tinnitus and hearing loss remained. 

In the summer of 2023, my eyes worsened. I had developed Geographic Atrophy (worsening Macular Degeneration), then suddenly developed double vision, added dizziness, and eye strain as a product of the double vision. It was also discovered that have the very beginnings of Cataracts.  

So all of last year we were: 

• trying to get my thyroid back to within normal limits

• trying to find the source of the intestinal bleeding

• trying to find out why I developed tinnitus and hearing loss

• trying to figure out why I developed double vision and how to try and correct it

• trying to figure out why my weight hasn't normalized

On top of all of that, I went through an episode of Depression after losing my soul-dog Decker, among other additional emotional stressors. 

We were also trying to figure out our little mini-aussie Comet - who has been having medical issues. Lots of physio appointments for him, diagnostic tests, and physiotherapy exercises at home. He has an appointment with a neurologist next month. 

Safe to say - 2023 was an excessively draining year. 

Now here's what we've figured out so far: 

• My thyroid is finally back to within normal limits (January 2024 bloodwork was the first normal thyroid result since early 2022). 

• Still no explanation for the intestinal bleeding, but it had improved by December 2023, after a year of potatoes and 5 months after re-adding the medication that had been removed in 2022. 

• The Macular Degeneration has created a scotoma (blind spot) right at my fovea (central focus point) in my left eye. So I developed what's called Dragged Fovea Diplopia Syndrome. Essentially, my left eye is displacing the central image, causing double vision. My eyes are trying desperately to connect the two images, causing strabismus. The double vision cannot be corrected, but there is a potential that it will subside when I lose all of my central vision in my left eye. 

• I have developed a nystagmus, likely from inner ear damage, causing uncontrolled eye movements and additional vertigo/dizziness. The likely suspect is the Labyrinthitis in 2023. I will be starting vestibular physiotherapy to try and correct it, although because it's been over a year, the doctor isn't overly optimistic. 

• It looks like I might have the beginnings of something called Otosclerosis in my left ear (based on a CT scan report). I am still waiting to see an ENT to find out for sure, to discover if I am a candidate for surgery, or if I will simply use a conductive hearing aid for the time being. I will need additional scans in a few months and will need to keep monitoring my tinnitus and hearing loss. 

I still have a lot of appointments coming up, but it seems like the investigations are almost at an end. 

So now my body feels like I ran a marathon every day for the last year. My body is depleted and drained and I am perpetually exhausted. 

Diagnostic years are like being stuck in suspended animation. So now that we have figured out everything that we can, my body can finally relax. So as much as I want to do things like work out, go for more walks, enjoy the nicer weather, do more things at home, my body is telling me to sleep. 

I feel like I could be in and out of sleep for a week or more.