My name is Amy and I have been just informed I have Clarkson’s Disesase. I am a mother of 3 and grandmother of 5. I have been battle with this for over 21 years and finally came across a doctor at the Mayo Clinic in Mankato that could tell me why. I created jobs for myself at home because I cannot be on my feet very long before I start swelling up, sick to my stomac, sleepy, dizzy, passout or just hurt. The more I stretch my mussels the more places the fluid goes and the bigger I get. I am owner & creator of www.jobs4teens.us and also part owner of Sports Life Magazine www.sportslifemagazine.com For years I have been told I swell because I am fat, I kept telling them no I am fat because I swell, I am female – I have had a hystorectomy & gulbadder out along with my apendics and whatever else they could find to take out, depression – gave me many different kind of pills I kept throwing them up and became even more ill, sleep disorder same thing when they tried me on sleeping pills, I smoke, you have a virus. I have spend 10’s of thousands of dollars and never found a doctor that was able to help me. I quit smoking for 4 years, went on every salt free diet you could think of for years at a time, some of it helped a little bit until I would start to swell again. I was 118 after giving birth to 2 children and now over 250 somedays. Each year it seems I strech out just a little bit and get bigger. I am so frustrated. My question to anyone with this is do you have strange cravings? Caffine will keep me awake and help with going to the bathroom, nicotine calm me down etc? When I am not feeling well my body will have overcoming urges to make its self feel better even though some of the urges are not healthy choices. The stragest things settle my stomac down, Mt. Dew, Cream of Mushroom Soup and dry wheat toast. Feel good foods/drinks.

Dear Amy: Welcome to our SCLS Community! People with SCLS have strictly temporary gains of weight depending on the amount of fluid they take or are given during the course of an episode, but rarely do they gain and then keep a higher weight. Also, in terms of cravings, SCLS patients become very thirsty while having an episode (because the fluid in their circulatory system leaks out for a few days), but that is usually it. My suggestion is that you make an appointment with Dr. Philip Greipp at the headquarters of the Mayo Clinic (in Rochester, MN), to be thoroughly evaluated, because it sounds like you may suffer from an illness other than SCLS.

Regarding the question of food and SCLS, I have found that during the onset of episodes, eating a small amount of food (I prefer low carb) eases the fatigue and anxiety symptoms. Temporary weight gain is one of my early warning signals (4-5 lbs. initially) so I weigh myself daily two or three times. I just had my first IVIG transfusion four days ago and am anxious to see if it slows the weekly episodes I have been having for the last year. I also participated in the NIH study about one year ago. You will have the opportunity to ask all the questions you have so make a list. Good luck.

Mahaff: Just read your updated profile. Congratulations on getting and using a HemoCue device! If it's true that you're still having frequent episodes despite being on a high dose of theophylline, the time has come for you to get on IVIG, I think. Let Dr. Druey and me know if we can help with this, OK?

Dear Amy, Regarding the weight gain - I have certainly gained weight gradually over the past several years, and I have been diagnosed with SCLS, but I think the weight gain is more of a byproduct of my much decreased activity. Since hot weather, exertion, even stress can aggravate my swelling, especially in the ankles and feet and lower legs and abdomen, I go to great lengths to avoid all of the above. This is a huge change in my lifestyle, and therefore I've gained weight. Sure, there have been times when I've gained 10 pounds and lost 10 pounds in a week's time during flareups, but the kind of weight you're talking about is likely due to the change in your lifestyle, which is absolutely understandable and in that way, related to your diagnosis. I would think that the earlier you're diagnosed, the less overall weight you would gain as a result of having any chronic illness. Once you have found a doctor and a proper treatment for any illness hopefully one can resume close to their prior activity level. Likewise if you go years without any answers, without any guidance or treatment, and quite probably living with a certain amount of day-to-day fear, there's just no way your activity level isn't going to be altered. As far as cravings go, yeah, sometimes I crave salty food, and I think that has to do with the sodium levels in my blood related to how much edema is present. And I also use caffeine. Even though I shouldn't.I can relate to a lot of the symptoms that you described. Good luck to you and I hope you get the appropriate treatment soon. Carole Thorn