I am new to this site. I would appreciate any ideas anyone may have. If more info is needed just let me know. My wife has had ongoing issues for 5 years now. We live in Texas. In July she spent 20 days at Scott & White in Temple. Before this started she weighed 140lbs and is now at 265 and has lost her job of 22 years. She is 41 years old. In the beginning doctors said it was in her mind because the problems came up shortly after her mother died. Over the past 3 years it seemed as though we were going to the ER at least once a week to have IV Lasix. Pill form never seemed to work. They would get 2 or 3 liters of and when they would let us go home with the catheter she could lose 13-18 liters with 24-36 hrs. Most of the weight is in the abdomen making her look 9 months pregnant and also in her legs where you can press a 1/2 inch dimple with your finger. Whenever she would have this fluid she would start fainting. All tests over the years could never find anything wrong. When she faints her blood pressure is very low. In July while visiting my father in the hospital she fainted and they admitted her. An EEG showed that she had non epileptic seizure activity. After 5 days and getting 9 liters of fluid off of her they transferred her to Temple. Dr.Starr in Temple sent blood sample to the Mayo Clinic suspecting Clarkson’s Syndrome but the test came back negative. After 20 days there my father passed away and she got out of the hospital for the services. After the tests came back negative and we stumped another dr. they totally lost interest. She is still undiagnosed…we’ve since changed insurance and now have new doctors looking at her that are stumped as well. Over 5 years of this, she was unable to go to work without passing out. All of her FMLA ran out and had to resign from a 22 career that she loved. She passes out a few times a day and we are just at a loss as what to do. All of the doctors say that it’s not going to kill her but they can’t tell us the cause so how can they be so sure? It has to take a toll on the rest of her organs as well. Her new Neurologist doesn’t think the fainting is really seizures but ordered a study to be done in Houston next month to rule it out. She will be wired up for up to a week in an apartment setting to try and capture an episode. He also ordered a “tilt table” test to be done by a Cardiologist that’s coming in from Austin. SCLS or Clarkson’s syndrome is still the closest thing to describe her problems. In the beginning she was also diagnosed with Fibro Myalgia. (sp). Does this sound similar to anyone? If anyone has any suggestions, comments or questions….go for it. We are at a loss and are close to losing everything we own including our minds. We have 3 children as well. Sorry this is so long. Trying to stuff well over 5 years into a short letter is impossible.Thank you for your time. Tim

Tim, I am so sorry to hear about your wife. My husband Nolan use to have episodes about every five days where he would swell and his blood pressure would drop. Sometimes he would pass out. It sounds like your wife could have SCLS. I am not sure what kind of test you did to test for SCLS but what you describe sounds like it. I don't think there is just one test. The only thing that has worked to stop the leaking is IVIG. Nolan started on it in July 2009 and has not had an episode since. It is amazing. I think you should consult Dr. Greipp or Dr Druey. I wish you the very best. Wendy

I am 42 years old and similar story to your wife's - leg and abdominal swelling, passing out from low blood pressure, weight gain; although her episodes sound more extreme than mine. I feel for all you've gone through, it's very frustrating, every last minute of it. I would recommend contacting Dr Greipp at the Mayo Clinic immediately for a consultation, even if for now it's only a phone (or e-mail) conversation. Both he and Dr Druey at NIH are amazing advocates for this syndrome, and have been very helpful & encouraging - I wish you & your wife the best of luck -

Thank you for your responses. Dr. Greipp will consult via email? What is IVIG? The doctors in this area treat us like a joke it seems. Losing my temper only gets police officers standing outside your ER door. Frustration is high but I just want someone to take this seriously. Name one other profession you could go this long without a diagnosis. My faith in doctors has dropped so much it's unreal. The human body has been around longer that automobiles but you wouldn't take your car to a mechanic who practices....you want one that is proficient. If he can't figure out the problem then find someone who can. We are working on over 5 years....I've been patient. As far as I remember. Dr. Starr in Temple sent blood sample to the Mayo Clinic. I'm not sure what all they tested but he was having them tested specifically for Clarkson's syndrome. He indicated that all tests came back normal. He has no interest in her now.

BTW. She has had Asthma her entire life and has had 4 sinus surgeries in her life. She always seems to have either allergies or cold symptoms so it's hard to say if there is a correlation between that and her episodes. Doctors have prescribed a multitude of pain meds and antidepressants for fibro myalgia (sp) and migraines.Prior to these problems she had a Nissen fundoplication procedure for severe acid reflux and about 6 months later she had a hysterectomy leaving one ovary. She takes medication for her thyroid as well. Through all of her testing the only problems they could find is a sluggish thyroid, she's slightly anemic and low iron. They suggested prenatal vitamins and she has been on them for a few months now. One endocrinologist found a hormone (forget the name but it is usually elavated in pregnant woman, something to do with producing breast milk) it was slightly high and the doctor found it odd.

I believe the allergy and/or cold symptoms are SCLS - I've got them full time, too. I think someone on this website has stated that is the fluids leaking - On another note, I can relate to your anger & frustration with the doctors - PLEASE contact Dr. Greipp. Many of the doctors I saw locally wanted to give me THE answer, and when they couldn't, were bored & did not want to move any further with or for me. Mayo Clinic is the total opposite of that, they dig until they find answers, and it did not take years. (my profile explains what a godsend my visit was for me) I also have the low thyroid, and an endocrinologist found cortisone/cortisol numbers to be odd (tied to SCLS???)I'm going to NIH in May (follow-up on SCLS study) with this new data and for further testing. Good luck to you and your family, and please keep your chin up -

Thank you for your responses and encouragement. I've never dealt with a doctor that is willing to deal with people via email. I will try to put something together for him. It would be extremely refreshing to go somewhere that looks for a cause instead of treating symptoms or sending you to Psychologists. Thanks again, Tim