Capillary Leak Syndrome - Immune Disorders Message Board

Walt CLS · 06-05-2008, 06:25 PM

Hello

I am new to this message board. I am looking to communicate with anyone with capillary leak syndrome.

Walt CLS · 07-11-2008, 10:55 AM

Hello Messie, Sugz, & Allen

I am hoping that you are still in contact with each other. I have been hopefull that you answer soon because you are the only ones that I know have this syndrome.

To start, I have only seen three doctors to date for this problem.

My first incident happened in Feb, 2005. I was not diagnosed with CLS. I was in the intensive care unit for 3 weeks and the only remaining effect was two total drop feet due to the swelling. I went 150 lb. to 240 lb. in hours. I did not get cut as some others have.
The second incident was Dec 2007, which they knew immediately that it was CLS. I was in for one week in intensive care with no other effects.
The third incident was March 2008, three days in the intensive care. Again, no other effects.
The fourth incident was June 2008, so they have come in a three pack. One day in CCU just to monitor me over night.

I am on Terbutelin, Aminophyline and singulair.

.

messie · 07-21-2008, 12:04 PM

Hi PA, I didnt see your name at the end of this posting, but Im Kathy. Im glad you have found us, its important that we all share our thoughts and issues. I also was excited when I finally found someone with CLS, although I would not wish this on anyone. Ive been "sick" free for 2 years now. I did come down with a mild cold back in March 2008, but with out needing to take anything I came out of it find with the drugs Im already on. Did you start out with a flu? Thats how mine started. I ended up with hammer toes. Once they found out what I had the 3rd time I came out of it much faster, mostly because they put me on Terbuteline and Theophylline, these two drugs seem to work for me so far.
I know it would be easier to respond to each others emails, but the one thing this site does is makes it more easier for other people to find us. Its been real hard finding people with CLS, and no one knows enough about it.
I only go into Boston to see my other doctor once a year. My local Dr can do all my blood work and then gives me the info on my levels and I make sure they fax it to Boston. That way if any adjustments need to be made to my meds Boston does it. My local Dr is ok with that.
I still freak out anytime someone here at work or around me gets a cold. I dont want to go thru that again and I pray I wont.
You may want to talk to your Dr about the other drug im on and see what they say. These are the two drugs "Clarkson" found back in 1960 and tried on 8 people who he found had this. Clarkson was the founder of CLS. The Dr's in Boston just tried these on me, and like I said so far they are working. They also told me everyone is different. Guess my body likes these drugs.
I still find it strange how no one knows how it starts and why. Too many questions and not enought of answers. Guess its people like us who can only share notes and give that info to our Dr's and see if they come up with anything.
We'll, I dont get on to Healthboards often enough, but I will try to make it a weekly thing so we can keep intouch. Its very important we let each other know how we are doing and sad to say, but something we have in commond.
Cant wait to hear from you again.
Kath

Allen1983 · 07-24-2008, 12:48 PM

Hi Joe,
Sorry I have not been checking the message board recently. I was diagnosed with Capillary Leak Syndrome at Mayo Clinic in August 2004. I got sick in November 2003. I have been pretty healthy though I had a very minor episode of Capillary Leak Syndrome in April 2008 but I just had to go into the hospital for a few hours to get fluids. The swelling that is classic with CLS went down in a week. I think I had a stomach flu. I have found that any systemic illness can trigger espisodes. I take 500 mg of theophlylline twice a day (12 hours apart) and that seems to control it. I have been lucky that the MGUS protein in my blood that causes CLS has not increased. I see a hemotologist, Dr. Hayman at the Mayo Clinc in Rochester, MN. I also have bi-lateral drop foot and wear splints to walk. Best, Allen

Allen1983 · 07-24-2008, 12:56 PM

Hi Kathy,

Sorry I have been meanging to get back to you sooner. I had a checkup with my hematologist and blood work all came back good. I had one minor episode in April 2008 but it was not real bad. I think I had a stomach flu and that triggered an episode of CLS.

Best, Allen