New Diagnosis and Yet Another Specialist

It was a week of appointments as I saw neurology, cardiology, as well as endocrinology. Ended with a new diagnosis of diabetes due to how high my blood sugar gets after eating and a referral to see another endocrinologist for evaluation of hyperaldosteronism.
The fun never ends!
Questions? Comments? Topics you want me to cover in more depth? Just want to say hi? Email me! [e-mail]
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My health started to majorly deteriorate in early March 2020 (though I had had some issues prior) with a fever, sore throat, cough, and shortness of breath. After a couple weeks, I was treated for a sinus infection, which I get every year. I continued to get worse and was tested for COVID 19 in early April, ~30 days after my first symptoms. It was negative. I had some health issues prior to March 2020, but everything seemed to go into overdrive afterward.
I was hospitalized 3x in 2020 with bilateral pneumonia. I was also found to have tracheomalacia in December 2020, meaning my trachea collapses when I exhale. Before I could get it surgically repaired, they found a tracheoesophageal fistula, a hole between my trachea and my esophagus. That was surgically repaired in April 2021. May 2021 I went to the ER and was found to have a right calf DVT and bilateral PE's. I was on Eliquis for 6 months, delaying the repair of my collapsing trachea.
In December 2021, I had a right heart cath (RHC) with 5 minutes of exercise which showed very mild pulmonary hypertension, the cause of which was never investigated, that my body wasn't returning enough blood back to my heart during exercise (preload failure), and the blood returning to my heart had a higher percentage of oxygen with exercise instead of a lower one (impaired oxygen extraction). This was actually my turning point. After doing some research, I started taking mitochondrial support supplements. That, combined with wearing oxygen 24/7 and taking Mestinon, has me MUCH more functional than the first 18 months of this journey.
Further cardiac testing shows I have mild thickening on my aortic valve as well as heart failure. After over four years, the cause of the heart failure/pulmonary hypertension is finally starting to be investigated. A cardiac biopsy showed lysosomal toxicity, hypertrophy, and fibrosis, among other things, so hopefully it will help solve the puzzle.
My EMG/NCS showed “modest motor unit potential changes of decreased amplitude, reduced duration, and minimal polyphasia,” consistent with myopathy. My QSART showed increased latency of the distal leg and foot, with decreased sweat production of the foot as well, which is seen in small fiber neuropathy.
After 3 years of having pulsatile tinnitus, I finally got the tests I needed and found out I have fibromuscular dysplasia. In my case, it's presenting as beading in my carotid and vertebral arteries as well as small aneurysms in my carotid arteries. Further imaging did not reveal any other affected areas.
As a way to tie all my symptoms together, I was evaluated for hypermobile Ehler's Danlos Syndrome. While I do not meet the strict criteria, my hypermobile joints are not the ones they test, I was given a diagnosis of hypermobility spectrum disorder, though it in no way explains all my symptoms. Whole exome sequencing of both nuclear and mitcohondrial DMA through Ambry was negative for mitochondrial disease, though that would explain all my issues.
I have something wrong with almost every system in my body. My life is nothing like it was prior to March 2020. I'm just trying to make the best of what I have.

[@kurtrogers8423]

Keep hanging tough! ❤

[@becomingapegazebracorn]

No other choice. One day at a time

[@Kerry_CYWG]

I’m similar with carbs and for me, white kidney bean extract works at slowing the absorption of carbs which reduces the spikes. I have been borderline type 2 for yrs.

[@becomingapegazebracorn]

Never heard of that, I'll definitely look it up. Thanks!!
I've known about my blood sugar after carbs for years now, but since my A1C and fasting is always normal, no one really listened to me. Prior to listening to the dietitian, my A1C was 4.9. So I'm low unless I eat.