I have been diagnosed for 4 years and since having IVIG and other meds I have not had an episode.....all seems to be going well for me at the moment although my consultant says we are in unknown territory, and I have recently been diagnosed with diabetes type 2 and not really keen to take metformin due to side effects....does anyone else out there take this drug??? as things are going well for me now I don't really want to rock the boat any advice would be great to hear...

Hello, Swelling has affected my pancreas and I am on low dose Actos, a related medication. I have a normal BMI and am very careful about avoiding carbs and fat in my diet in the hope of eliminating the need for this type of med.

thanks for your post and I will try your suggestion of reducing carbs and fat so hopefully wont have to take any kind of medication..... I'm hoping that exercise and diet will be able to control the diabetes....but as I find exercise difficult we will see....im going to try swimming and see how I get on thanks again and any other suggestions would be greatly appreciated

Though it may sound odd, my endocrinologist has recommended a small portion of sugar-free gelatin prior to each of six very small meals per day. Though originally skeptical, it has made a big difference in keeping my hypoglycemic roller coaster a smoother ride. Susan

Hello, My consuultants say i  seem to have this syndrome with a difference, I seem to keep a lot of the fluid after the ordeal/flare up...don't even know what to call it! Also my bloodpressure plays a game of up down, not like the drop and stay there many of you must experience. Does anyone else experience this? How are you treated? I seem to be the only person my consultants have come across with this condition. (well my version of it). I would really appreciate any feedback, anyone like me or anything really. 

Hi Beverly,

I have also discovered SCLS has several ways of presenting itself.

My case is also one of the "frustrated" ways the condition appear to present.

Doctors in Spain and Sweden have confirmed so and luckily, My case is mild and caught on time as they believe of not treating it now, the condition may have developed in a matter of time, maybe some years.

I am currently taking 15mg of Terbutaline a day along with 200mg of spironolactone due to an important suprarrenal  hormones imbalance the first and most severe attack caused.

I haven had any other attack since January 31sr when started the treatment.

Doctors are positive I will get in remission.

Feel free to contact me everyone who would like to participate in the book I am currently writing abour SCLS called "Walking with Clarkson". Exposing different case presentations of this condition and a shoutout to doctors be knowledgeable if the importance of an early diagnosis and treatment.

Thank you very much!

Valeria.