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.
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
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
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
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
