My name is Sharlene Balinsky. I am 38 years old and have classic MSUD. I live in Montreal, Canada with my boyfriend, and work as a receptionist in an office. I recently had surgery for a cyst on my ovary. Here’s how it happened.

I was having stomach pain for quite a while. When it didn’t get better I decided to go and check out the situation. First, I went to my family doctor who thought it might be the flu. She told me to give it a week and come back if it wasn’t any better. In my opinion, I was getting worse. I had constant headaches. So, I called my family doctor five days later and told her how I was feeling. By this point I was already starting to lose weight and not eating much due to the severe pain. All in all, I lost 11 or 12 pounds, and went from 96 to 85 pounds.

I went back to my family doctor. She did all kinds of tests, and decided to send me for an X-ray to see if anything showed that could not be picked up otherwise. After 10 days, what seemed like a long time, my family doctor got the results. It showed a big cyst on my ovary. She sent me to an OB/GYN, who is very good and highly recommended, to verify this. I went to meet with him and he confirmed that it was a big cyst and needed to be removed.

Not long after, he coordinated the surgery with the hospital and my metabolic doctor.

At one point while all this was going on I was dizzy, had a terrible headache and hallucinating in the middle of the night. The next day I called Dr. Mitchell and told him what had happened.

I went the following day to have my level checked and got the results a week later. They said I was probably hallucinating because my levels were around 1401!

March 2nd was the day I went in for surgery. After being on IV glucose and lipids for 24 hours, my levels dropped down to 700. The surgery was much longer than expected but everything went well. The surgeon consulted Dr. Mitchell all the way. After surgery I was able to drink my formula and had a complete recovery. I did not regain all the weight, but am now 91 pounds and feel good. thanks to all the doctors for all the great care!

Indigo Charlie Mays - Variant MSUD Age 4

Meet our girl Indigo Charlie Mays. After a smooth pregnancy and delivery, she was born on July 21st, 2013 in Seattle, WA.

Read More

MSUD Advocacy Update

Healthcare and issues facing the rare disease community have been at the forefront of national conversations over the past 6 months.

Read More

Updates To Nutrition Management Guidelines

The Nutrition Management Guideline for MSUD was first published in 2014. Since that time, there have been reports of new research and experiences that have prompted updates of the guideline.

Read More

Adjusting Protein In An Adult With MSUD

A little over a year ago, in January, Jeff was just not himself. He had limited energy, was not eating well, and often appeared slightly agitated.

Read More

In The Professional Journals

A Patient with MSUD: Acute Management with Sodium Phenylacetate/Sodium Benzoate and Sodium Phenylbutyrate

Read More

Galen Carrington Classic MSUD age 27

Galen Carrington is a 27 year old Indiana resident who has classic MSUD. He underwent liver transplantation 5 years ago at Children’s Hospital

Read More


A Child's Life

Subscribe to our mailing list

Signup To Our Newsletter Signup with your email address to receive news and updates