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Old 12-31-2006, 12:42 PM   #1
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messie HB User
Capillary Leak Syndrome

In June of 2006, I was diagnosed with Capillary Leak Syndrome, a rare disorder of the immune system. My searching indicates there are less than 80 documented cases and very little understanding of why someone gets it, and how to treat it. Fortunately, I reside near a major teaching hospital with state of the art medicine. They were able to get me through 2 life threatening episodes, and then diagnosed me with the disorder. I am currently on a combination of 2 medicines to keep my immune system working properly. The treatment being used was the treament that the Mayo Clinic used in a study of 10 people with the disorder, 8 of which had a long survival rate. Early symptoms for me were a cold that just seemed worse than normal. That, accompanied with extreme fatigue and swelling, were the symptoms that preceded each event. Upon admission to the local hospital, my body showed signs of extreme dehydration, including an extremely low blood pressure and rapid heart rate, but nothing else. Furhter testing showed elevated white blood cells, and elevated protein and albumin. Later, we would discover that the protein and albumin were signs of the disorder. Both episodes left me in the hospital for several weeks initially fighting heart failure due to the excessive fluid build up around my heart and lungs. Although my body initially appeared dehydrated, in the end there was massive fluid overload. If anyone else out there has been diagnosed with CLS, I would love to exchange information on the experience and how to continnue to live life as normal as possible with the disorder.

Last edited by messie; 12-31-2006 at 01:02 PM.

 
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Old 02-25-2008, 11:07 AM   #2
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Allen1983 HB User
Re: Capillary Leak Syndrome

Hi,

This is the first time I have run across someone with the same rare blood condition that I have, Capillary Leak Syndrome. I have had CLS since Nov. 2003 when I was admitted to the George Washington University Hospital in Wash, DC with flu like symptoms. I was in the ICU for 10 days, had renal failure, high concentration of red blood cells, extreme swelling and compression syndrome which led to severe nerve damage. I was not diagnosed until a friend told me about Dr. Philip Griepp at the Mayo Clinic.
I met with Dr. Griepp and his associate Dr. Hayman in Aug. 2004 and blood tests revealed that I had CLS. I have been taking theophylline to control the sydrome and thankfully have not had any further episodes. From time to time i do become extremely fatigued, and my muscles feel very tight but it usually goes away. I would be very happy to speak with anyone about the condition.

 
Old 03-08-2008, 11:21 AM   #3
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messie HB User
Re: Capillary Leak Syndrome

Im really excited that someone finallyresponsed that I can relate to. I am also on Theophylline twice a day and I take Terbutaline 5 times a day. Do you take Terbutaline also? I go have my blood work done every 3 to 4 months to check levels. This is what "Clarkson" @ the Mayo Clinic gave to the 8 people in 1960 and it seemed to work. I have so many questions to ask you. Have you gotton a cold since? Flu? I have gotton a slight cold, and got thru it with no issues. I do get the Flu shot. I also get fatigued when I walk or do too much. My nerve damage left me wtih hammertoes on both feet. My hands are tight, but I can move my fingers. I still have no feeling in most of my feet and my fingers. I know people dont like to mention age, but I was 53 when I first got sick. From what I read most people start around 53. I would like to know if there was a group out there, but Ive been emailing news channels, doctors, etc. Not many people know about this and I have not heard of a support group. I do feel so many people had this, but died. At firs Mass General (Boston) thought I cought a virus. The third time they got it right and it was only because one doctor that saw me knew of this illness.
What made your friend send you to Dr. Griepp? Had he/she heard of CLS?
I really cant believe I found someone I can talk to about this. Most of all just to beable to ask what your feeling, what you worry about, other then getting sick, but just to know your not out there alone. I would like so much to make people aware of CLS. In the past 8 months, 2 other women have come down with CLS in Mass, near the Boston area. I dont know who they are, I only found out because people at work and at my doctors office talked about me and CLS. These two people were saved, because people knew what to have the doctors test their blood for. Hopefully the more you talk to new people about CLS they will pass it on.
We'll I hope I havent typed your ear off, but I should end for the moment.
I dont get on healthboards every day, but now that I know your out there, I look forward to writing to you.
Kathy

 
Old 03-15-2008, 09:20 AM   #4
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messie HB User
Re: Capillary Leak Syndrome

Im really excited that someone finallyresponsed that I can relate to. I am also on Theophylline twice a day and I take Terbutaline 5 times a day. Do you take Terbutaline also? I go have my blood work done every 3 to 4 months to check levels. This is what "Clarkson" @ the Mayo Clinic gave to the 8 people in 1960 and it seemed to work. I have so many questions to ask you. Have you gotton a cold since? Flu? I have gotton a slight cold, and got thru it with no issues. I do get the Flu shot. I also get fatigued when I walk or do too much. My nerve damage left me wtih hammertoes on both feet. My hands are tight, but I can move my fingers. I still have no feeling in most of my feet and my fingers. I know people dont like to mention age, but I was 53 when I first got sick. From what I read most people start around 53. I would like to know if there was a group out there, but Ive been emailing news channels, doctors, etc. Not many people know about this and I have not heard of a support group. I do feel so many people had this, but died. At firs Mass General (Boston) thought I cought a virus. The third time they got it right and it was only because one doctor that saw me knew of this illness.
What made your friend send you to Dr. Griepp? Had he/she heard of CLS?
I really cant believe I found someone I can talk to about this. Most of all just to beable to ask what your feeling, what you worry about, other then getting sick, but just to know your not out there alone. I would like so much to make people aware of CLS. In the past 8 months, 2 other women have come down with CLS in Mass, near the Boston area. I dont know who they are, I only found out because people at work and at my doctors office talked about me and CLS. These two people were saved, because people knew what to have the doctors test their blood for. Hopefully the more you talk to new people about CLS they will pass it on.
We'll I hope I havent typed your ear off, but I should end for the moment.
I dont get on healthboards every day, but now that I know your out there, I look forward to writing to you.
Kathy

 
Old 04-13-2008, 03:11 PM   #5
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sugzey$ HB User
Re: Capillary Leak Syndrome

Hi Kathy,
Sorry I haven't been back in touch with you sooner. Nothing has really changed about my sister's CLS. She is 64 yrs. old now and it was diagnosed in 1990 when she was 46 years old. She is on the same meds I told you about earlier and still gets the IVIG (Intravenous Immune Globulin) ever 4 weeks. I just talked to her a few minutes ago and she told me that one thing that she has to take when she feels an episode coming on is Zyflo. She says it seems to reverse whatever it is that is happening to her. She doesn't have any nerve damage that she knows of. She is in Wilmington, NC and comes to Chapel Hill in the Raleigh area to see her doctor a couple of times a year. Glad you are still doing good and glad you have found someone else on this site to correspond with. Wish my sister would get savvy and learn how to use the computer at her house! Take care. Ann

 
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Old 04-17-2008, 10:39 AM   #6
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messie HB User
Re: Capillary Leak Syndrome

Hi Ann,
Yea it has been a while. Let your sister know we found another person. I have not heard back from him, but Im sure I will. I did come down with my first cold 2 wks ago, ran to the Dr's and they did blood work to see where my levels were and everything was great. Blood Alblumin & protine levels since this is what crash's on me and I go into CLS. I was scared, but got thru it. I still feel great. Keep intouch so I know how your sister is doing. Hopefully I hear from that guy so we can get more detail.
Kath

 
Old 04-17-2008, 01:45 PM   #7
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sugzey$ HB User
Re: Capillary Leak Syndrome

Kath,
Glad you are doing okay. Will let my sister know. Take care and I've subscribed to this thread so I can read what you and the guy are saying when you correspond with each other. Ann

 
Old 04-22-2008, 02:45 PM   #8
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Allen1983 HB User
Re: Capillary Leak Syndrome

Hi Messie,

Sorry I have not checked the Board for a few weeks.
I am also very happy to finally meet someone with CLS too though of course I wish I didn't have it! I only take the 300 mg of theophylline twice a day but I don't take terbutiline. I have been very lucky and have only had one very minor episode in the past 4 1/2 years. My one and only minor episode happened two months ago. I think I had some the flu and felt very tired, my legs swelled up some and felt very tight. I also lost my appetite.
I did go to the ER and they gave me fluids and in a few days everyting went back normal though it took about a week for the swelling to go down. I have drop foot as a result of my initiatial CLS episode. I swelled up like a balloon and they have to perform faciotomies on my legs and arms. As a result I can't move my feet up so I wear flexible carbon braces. I have gotten used to them and can do everything but run and mountain climb which is fine with me! I was 43 whe I first got CLS. I do worry about getting sick since I believe that major illness triggers CLS. I guess my immune system overreacts to any infection. It does not know when to call back the troops! Dr.Griepp at Mayo did a study on CLS in 1999 [url]http://www.annals.org/cgi/content/abstract/130/11/905[/url]
I visit Mayo once a year for checkups and then consult with a hemotologist in Washington every 6 months. I'd love to hear more from you and would also be interested in starting a CLS group. Best, Allen

 
Old 04-29-2008, 01:27 PM   #9
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messie HB User
Re: Capillary Leak Syndrome

Hi Allen,
You must have freaked when you got sick. Did they put you on predisone at all? I came down with a chest cold about a month ago, I went to the dr's and all my blood levels staged good and luckly I got thru it with no trips to the hospital. I swelled up also real bad both times in the hospital before the figured out what I have. That scares me, Im always weighing myself. They had put some type of boots on my feet so I wouldnt get drop foot. Now I just have hammer toes from all the damage. Luckly my hands came back to full use, but still no feelings in my fingers, feet and part of my legs. Guess we're luck to be alive. I gave my Dr. Dr Griepp's name and I know she contacted him. He said not one case is alike and as long as my meds were working leave me like that. I just wish we new more about this and it would go away as fast as it came. I like the idea of starting a group. How do we find more people? There is one other woman who's sister gets on healthboards, if you had read some of these reply's her name is Ann. She was happy to see someone had responded to me. I dont know how you felt in the hospital, but between that and rehab, 9 months later I was able to go back to work part time. I had my friends take a picture of me, so if I lived I could see what they saw. It wasnt nice. Didnt know the body could expand that much. Well, Im at work right now and getting ready to leave. I wish we could find a better way to talk about this, but this works also. Kathy

 
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