Myoclonus?

[blackkat2]

Hi, does anyone else here suffer from severe bouts of full-body myoclonus? It started when I was on peritoneal dialysis, in connection with a medication called ropinerole. It continued after I stopped the medication, and even 3 years after my transplant. I've seen neurologists, had EEGs, done everything anyone could think of in search of answers, to no avail.

[WYOAnne NKF Ambassador]

I do not have MYOCLONUS but I am post transplant also. If your problem persists don't give up finding the cause.Back in March, I started to run a fever. The lock-down for COVID had started so doctors assumed I had COVID. A month later, I was still running a temp, so doctor sent me for the COVID test. It was negative. PCP sent me to infectious disease. Over the course of 2 weeks had every blood test imaginable and a renal ultrasound. Tests turned out pretty normal except showed I had some inflammation somewhere. That doctor did not have the answer. My PCP sent me to cardiology for a TEE. Test done at hospital under anesthesia where you swallow a camera so they can look at your heart. No sign of endocarditis. I continued with the fever and was feeling much worse. Talked with PCP and he said he would not give up. By now it's July, and he sent me for an ultrasound of my gall bladder. They inject a hormone during the test that makes your gall bladder think you just ate a fatty meal. That did it.....I got deathly sick. 3 days later I was in surgery. My gall bladder was enlarged, inflamed

and was backing up into my liver.

I guess my point is to not give up! I went through 4 months of running a fever before they finally found the cause. I had my transplant in 1999, so yes 21 years ago.

Keep the faith!

[blackkat2 in reply to WYOAnne]

Wow, what an ordeal to face in the middle of a pandemic! Point taken. Thanks!