Hello my name is Daus Hempker. Im a wounded soldier at the 101st screaming eagles. I have a on going issue with MALS. I have deployed to Iraq and Afghanistan where I was wounded. They claim my MALS is PTSD or pyshogenic vomitting or undifferiented somatoform disorder. It has literally destroyed my life in the past two years. I am going to start foundation to beat this disorder and make it more well known throughout the medical community. I have read nothing but horror stories of misdiagnoses, pain, nausea which is at times uncontrollable. I need more people with this problem to talk to me. I have yet to get the help that I need and I am literally fighting every doctor in the army right now. Please whoever you are with whatever knowledge you may bring contact me. Together with all of our resources we can beat this and prevent it from destroying anyone elses life. Please, please, please contact me.

Hi Daus,

My name is Jan and I have suffered with MALS for some years now. Yes it is a miserable problem I must say! I have been from Cleveland Clinic to Mayo to UCLA. I had surgery in January 2012, at UCLA . The surgery took 6 hours, and they do have a surgeon who can perform robotic surgery (DiVinchi)( I was to tiny for it). But the robotic surgery cuts down on bleeding risks, healing time etc.
I know of a few areas of the US that deals with MALS. Chicago Comers Hospital, contact Christopher Speaker; or UCLA contact Dr. JC Jimenez and Dr. Erik Dutson. I know in VA they also have a teaching hospital that deals with MALS. I would be more than Happy to chat with you about MALS. It is Hell. I totally understand you and what you are feeling. Can I also say, Thank You for your time served in our military. Thank you for keeping us safe~
Depending on where you are in the country, I can try to help direct you to the people who can help you with MALS.

Thanks Daus, take care and you can email me at jelly60@yahoo.com
Jan

Hi, I'm new to this forum! My name is Kelsey, I'm a 20-yr-old dancer and student living in NYC and I've been suffering without a diagnosis for over a year. MALS was JUST confirmed for me this past week, and I've been told I'm a good candidate for laparoscopic surgery-- but I am a very active person, and want to avoid laparoscopic (and definitely open!!) surgery if possible... I've heard different things about the robotic/DaVinci approach... I want whatever will make me healthiest, and the most effective. Mostly, I'm looking for advice on the following things:

- best surgeons to contact (laparoscopic and vascular, and robotic)
- best hospitals to get in touch with
- has anyone else had chronic/constant nausea as a primary symptom???
- recovery time?
- do your symptoms come back post-surgery?

Please write back if you have any suggestions. I cannot tell you HOW appreciative I will be. Looking forward to hearing from someone, anyone! THANK YOU!!

Kelsey

Hello Daus,

First thank you for serving.
Yes, everyone thinks at first that this syndrome is in your head. Finally got a diagnosis after 2 years this last Sept 2013 and I am searching the internet on where to go for surgery. People need to be aware of how destructive this syndrome is. It seeps into every aspect of your waking life. I as some of the others am getting to the point of becoming housebound.

If you have had surgery for this, please let us know!

Susan
Chislw@aol.com