Kamilia Asks for Patients with Similar Symptoms Associated with Pseudohypoparathyroidism to Connect

I’m 21 years old and, for a very long time now, I’ve been burdened with pseudohypoparathyroidism.

Unfortunately, for about five years now, the symptoms and the illness itself have begun to affect my everyday activities and functions. An insane amount of hospital visits hasn’t led to much else except more unanswered questions.

Stomach pains of unknown origin, shaking hands and feet with loss of feeling, a constant laryngeal cough, muscle and joint pain, and sore calves which make walking without pain an impossible feat all make my everyday life a struggle.

Constant drops in my calcium level also make concentration and renal pain (due to elevated white blood cells) a huge problem.

As well as all the symptoms written in the above paragraphs, in the past few months, I’ve gained around 30kg of weight that was not brought on by a change in my diet. To this day, we have no idea what’s causing it. Lately my headaches, accompanied by extremely low calcium levels (that do not want to be raised, even by high doses of calcium), have also come back.

There is also a visible calcification in the basal ganglia of my brain as well as changes to my right adrenal nodules. Numerous other visits have ended with me being diagnosed with bile reflux, gastric polyp and hypothyroidism.

I’m sincerely asking anyone with any information on what this could be or persons experiencing similar symptoms to write about them to [email protected].

Thank you,

Kamila.