Walt CLS
06-05-2008, 09:25 PM
Hello
I am new to this message board. I am looking to communicate with anyone with capillary leak syndrome.
I am new to this message board. I am looking to communicate with anyone with capillary leak syndrome.
Sponsor
Walt CLS
07-11-2008, 01:55 PM
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.
.
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, 03:04 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
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, 03:48 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
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, 03:56 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
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
Allen1983
07-24-2008, 04:03 PM
Hi Kathy,
I forgot to metion that my doctor said he knew of another doctor's patient in Washington who has CLS. I passed my information on to the doctor and am waiting to see if I hear back from them. I agree with you that the more we know the better off we all are in fighting this syndrome.
Best, Allen
I forgot to metion that my doctor said he knew of another doctor's patient in Washington who has CLS. I passed my information on to the doctor and am waiting to see if I hear back from them. I agree with you that the more we know the better off we all are in fighting this syndrome.
Best, Allen
moderator2
07-24-2008, 05:24 PM
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Walt CLS
07-28-2008, 10:10 PM
Hi everyone,
I thought you were all done with this website. I am glad to hear you are still talking.
I had no incidents for three years. Then this year i have had minor ones. I just had one today but it was so mild that I just called the doctor. If my blood pressure stays up and no swelling I just try to stay awake and keep moving. It seems to be better.
I started with the flew on the first and second, but they think hayfever may be bringing it on this summer.
I see my family physician who keeps Mayo up to date with my situation and an Intesive care doctor who sees me when the flair ups are bad.
I take aminophyline and terbutalin. I also started on Singulair recently.
I know when mine is coming on. I feel exttremely tired and don't care to get up. I would sleep all day if my wife let me. Since I usually only sleep 6 hours a day, she knows when to take me in. They give me 250cc of albumin at the emergency room and then I go home.
Hope everyone will stay on the board.
Walt
I thought you were all done with this website. I am glad to hear you are still talking.
I had no incidents for three years. Then this year i have had minor ones. I just had one today but it was so mild that I just called the doctor. If my blood pressure stays up and no swelling I just try to stay awake and keep moving. It seems to be better.
I started with the flew on the first and second, but they think hayfever may be bringing it on this summer.
I see my family physician who keeps Mayo up to date with my situation and an Intesive care doctor who sees me when the flair ups are bad.
I take aminophyline and terbutalin. I also started on Singulair recently.
I know when mine is coming on. I feel exttremely tired and don't care to get up. I would sleep all day if my wife let me. Since I usually only sleep 6 hours a day, she knows when to take me in. They give me 250cc of albumin at the emergency room and then I go home.
Hope everyone will stay on the board.
Walt
Allen1983
07-31-2008, 05:09 PM
Hi Walt,
I'm very happy to hear that aside from minor ones, that you have not had an episodes in three years. The same is true for me and I have had CLS for almost 6 years now. I take 500 mg of theophylline twice a day. It seems to work for me though sometimes it makes it hard for me to sleep at night. Like you I can't more than 6 hours of sleep a night but I manage. When I did have a minor episode in April I felt the same was as you, I was very tired and my legs started to swell up and my face got a little puffy. I went into the ER and they just gave me fluids and within a week the swelling went down and I wasn't tired. My albumin was fine so they didn't need to give me any. It's interesting to hear that you take singular. I should ask my doctor about it. Do your internist suggest singular? Do you take any other medications if you feel an episode coming on? I had a stomach flu when I got sick in April and I had a very bad flu when I got sick the first time so I try and stay healthy and get a flu shot in the Fall.
Do you have a doctor at the Mayo Clinic that you see? If anything every comes up please send a message to the Board and I try and check it more frequently. I am very happy to be able to talk to you all about our rare condition.
Take care and stay healthy!
Allen
I'm very happy to hear that aside from minor ones, that you have not had an episodes in three years. The same is true for me and I have had CLS for almost 6 years now. I take 500 mg of theophylline twice a day. It seems to work for me though sometimes it makes it hard for me to sleep at night. Like you I can't more than 6 hours of sleep a night but I manage. When I did have a minor episode in April I felt the same was as you, I was very tired and my legs started to swell up and my face got a little puffy. I went into the ER and they just gave me fluids and within a week the swelling went down and I wasn't tired. My albumin was fine so they didn't need to give me any. It's interesting to hear that you take singular. I should ask my doctor about it. Do your internist suggest singular? Do you take any other medications if you feel an episode coming on? I had a stomach flu when I got sick in April and I had a very bad flu when I got sick the first time so I try and stay healthy and get a flu shot in the Fall.
Do you have a doctor at the Mayo Clinic that you see? If anything every comes up please send a message to the Board and I try and check it more frequently. I am very happy to be able to talk to you all about our rare condition.
Take care and stay healthy!
Allen
Walt CLS
08-01-2008, 07:18 PM
Great to hear from you Allen,
I have to tell you that I was not afraid of anything before, but CLS is too unknown.
I have been checking this website since my Phys Therapist found it for me. I have two drop feet from my first go. They were going to cut me like you, but decided not to. I am 51 and a little stubborn when it came to wearing the braces. After 4 physical therapists, I found one that took an interest. Plus I am a little stubborn. He worked the crap out of me and I have been off the braces for 2 1/2 years. I have always stayed in decent shape due to my two sons interest in sports. I also coach baseball.
What my PT found out is that if you push the legs, even though the nerves are shot, other small muscles adapt. I still trip once in a while, but most people can't tell I have drop feet. I run on a mini trampoline everyday (no shoes). Yes, I can run somewhat. I isn't pretty though.
My family doctor prescribed the Singulair, not Mayo. He talks to Mayo frequently . I have not been there yet. I was too go this Monday, but due to the small occurences, my doctor said to hold off from flying up to MN.
The Singulair actually came from a Rheumatologist at Kansas City Medical University. He has some knowledge of CLS. I think it is causing hayfever symptoms though. I never had hayfever, now it is terrible. I see the doc in two weeks and will discuss maybe not taking it for a while.
I take aminophylline instead of the theophyline. It seems to be easier to take.
I agree with the sleep problem, last night 2 hours.
My life has changed in the fact that winter time is a worry (flews), don't like to travel much due to the possible incidents and I am always tired. i am an engineering manager and still working. I just don't travel anymore.
Other than that I still do most things around the house.
This healthboard is great. I finally get to communicate with others. Too bad we can't talk otherwise.
Hope you check in once in a while as well as the others.
Talk to you later
Walt
I have to tell you that I was not afraid of anything before, but CLS is too unknown.
I have been checking this website since my Phys Therapist found it for me. I have two drop feet from my first go. They were going to cut me like you, but decided not to. I am 51 and a little stubborn when it came to wearing the braces. After 4 physical therapists, I found one that took an interest. Plus I am a little stubborn. He worked the crap out of me and I have been off the braces for 2 1/2 years. I have always stayed in decent shape due to my two sons interest in sports. I also coach baseball.
What my PT found out is that if you push the legs, even though the nerves are shot, other small muscles adapt. I still trip once in a while, but most people can't tell I have drop feet. I run on a mini trampoline everyday (no shoes). Yes, I can run somewhat. I isn't pretty though.
My family doctor prescribed the Singulair, not Mayo. He talks to Mayo frequently . I have not been there yet. I was too go this Monday, but due to the small occurences, my doctor said to hold off from flying up to MN.
The Singulair actually came from a Rheumatologist at Kansas City Medical University. He has some knowledge of CLS. I think it is causing hayfever symptoms though. I never had hayfever, now it is terrible. I see the doc in two weeks and will discuss maybe not taking it for a while.
I take aminophylline instead of the theophyline. It seems to be easier to take.
I agree with the sleep problem, last night 2 hours.
My life has changed in the fact that winter time is a worry (flews), don't like to travel much due to the possible incidents and I am always tired. i am an engineering manager and still working. I just don't travel anymore.
Other than that I still do most things around the house.
This healthboard is great. I finally get to communicate with others. Too bad we can't talk otherwise.
Hope you check in once in a while as well as the others.
Talk to you later
Walt
flowergirl2day
08-04-2008, 02:25 AM
Hi,
I have several questions about CLS and hope someone can answer them.
WHICH parts of the body are affected by the CLS and become swollen? How severe is the swelling? How can one tell a difference between a peripheral edema, an ascite-type of a swelling and the swelling associated with CLS? Are there special blood tests to run? Are the hands affected as well?
thank you,
flowergirl
I have several questions about CLS and hope someone can answer them.
WHICH parts of the body are affected by the CLS and become swollen? How severe is the swelling? How can one tell a difference between a peripheral edema, an ascite-type of a swelling and the swelling associated with CLS? Are there special blood tests to run? Are the hands affected as well?
thank you,
flowergirl
messie
08-04-2008, 05:29 PM
Hi Flowergirl,
I swelled all over my body including my hands. I first noticed it in my face. In March of 2005 I notice I got really tired even going from the living room to the kitchen. My local doc felt I was getting de-hydrated. She did all kinds of blood work and everything looked great except my blood albumin was low, but didnt know why. I then cought a really bad cold in Oct and thats when I started to passout and swell rappidly. At that point, I was sent to Mass General Hospital about to die due to the swelling and all my organs shutting down. Some how they pulled me out of death and they thought I had a virus. I had another attact in March 2006 and still they found nothing. But this time it wasnt as bad. My last time was June 2006 and same thing as the first time with all the swelling and organs shutting down. Close to death, but at that point one of the Dr's suggested I had CLS. The key part for me was that my protine levels had crashed and my blood albumin levels were crashed. They put me on a lot of streiods along with Terbutaline 5 mg's 5xday and Theophylline 300 mgs 2xday. I know only take the steroids when I have any major teeth work done like pulling or gum work. I go every 4 months for them to test protine, albumin and Theophylline levels. So far Ive only had one mild cold and with no extra drugs or going to the hospital I was ok. I worry everyday and more so when someone at work is sick with anything. I did not get drop foot, but did get hammer toes. My hand are back about 90 %. Still no feeling in hands and feet, but Im alive. I really do feel since most DR's dont know about CLS people just end up dying from heart failure.
Hope this helps.
Kath
I swelled all over my body including my hands. I first noticed it in my face. In March of 2005 I notice I got really tired even going from the living room to the kitchen. My local doc felt I was getting de-hydrated. She did all kinds of blood work and everything looked great except my blood albumin was low, but didnt know why. I then cought a really bad cold in Oct and thats when I started to passout and swell rappidly. At that point, I was sent to Mass General Hospital about to die due to the swelling and all my organs shutting down. Some how they pulled me out of death and they thought I had a virus. I had another attact in March 2006 and still they found nothing. But this time it wasnt as bad. My last time was June 2006 and same thing as the first time with all the swelling and organs shutting down. Close to death, but at that point one of the Dr's suggested I had CLS. The key part for me was that my protine levels had crashed and my blood albumin levels were crashed. They put me on a lot of streiods along with Terbutaline 5 mg's 5xday and Theophylline 300 mgs 2xday. I know only take the steroids when I have any major teeth work done like pulling or gum work. I go every 4 months for them to test protine, albumin and Theophylline levels. So far Ive only had one mild cold and with no extra drugs or going to the hospital I was ok. I worry everyday and more so when someone at work is sick with anything. I did not get drop foot, but did get hammer toes. My hand are back about 90 %. Still no feeling in hands and feet, but Im alive. I really do feel since most DR's dont know about CLS people just end up dying from heart failure.
Hope this helps.
Kath
flowergirl2day
08-04-2008, 08:59 PM
Kath, :)
thank you so much for describing your experience! Your post is very helpful. I am so glad that you are OK now, despite all you've been through.
The biggest problem with this and other types of diseases is diagnosing them correctly. As you pointed out, our physicians are not familiar with some of these rare conditions. They misinterpret the symptoms and attribute them to a condition that is more common, or simply admit that they haven't been able to determine the exact cause of a problem. When I read the earlier posts in this thread, I was shocked. I didn't know this condition existed.
My blood vessels and other organs sustained damage from hypertension, which had gone uncontrolled and remained undetected for a long period of time. There's a slim chance the capillaries could leak. Though seldom, I suffer unexplained periods of extreme swelling. I had one such episode last year and thought I'd break out of my skin. I was HUGE. It lasted maybe a week and a half. I then went back to being my "normal" self - meaning only the leg and foot/ankle edema and some (but not bad) abdominal swelling. The only body parts not affected seem to be the arms,(NOT hands), the neck, and the face. I am on a bunch of meds which could be responsible for it. One or more of my health issues could be causing the edema(s) as well. This is why it is hard to tell what's what. My legs are swollen all the time. I am going through another one of those episodes of extreme swelling right now. The edema makes it difficult to breathe, worsens my nausea to the point of vomiting, and creates a lot of extra pressure, aches and pains. Of course, nobody really knows what exactly is causing it - the meds, the health issues, or both. I am getting tired of carrying that extra weight around and feeling so miserable. It's been a couple of weeks now. :(
Sorry for venting. I feel better already! I will try to learn more about this condition. It's good to know it exists.
As for albumin levels, my microalbumin is really high, BUT I have impaired kidney function. So, again, hard to tell.
P.S. I did some reading - one article was an interesting 9 year study of eight patients with this condition by a famous clinic. They were followed from the admission, through treatment, subsequent episodes of CLS, changes in medication, complications etc. over the years. Most are doing fine. :) A couple of photos and drawings were provided. In one, a cross section of a muscle affected by CLS could be seen, clearly showing the compression of the nerves and blood vessels. In another, a face of a person with acute CLS.
Is the face ALWAYS involved in each episode?
How low does the systolic blood pressure drop during a CLS episode? Is the hypotension fleeting, and does the blood pressure normalize afterwards?
Sorry about the questions.
There was also a comment about how in most cases this condition is underdiagnosed, due to its rarity and because the ER doctors are not familiar with it.
flowergirl
thank you so much for describing your experience! Your post is very helpful. I am so glad that you are OK now, despite all you've been through.
The biggest problem with this and other types of diseases is diagnosing them correctly. As you pointed out, our physicians are not familiar with some of these rare conditions. They misinterpret the symptoms and attribute them to a condition that is more common, or simply admit that they haven't been able to determine the exact cause of a problem. When I read the earlier posts in this thread, I was shocked. I didn't know this condition existed.
My blood vessels and other organs sustained damage from hypertension, which had gone uncontrolled and remained undetected for a long period of time. There's a slim chance the capillaries could leak. Though seldom, I suffer unexplained periods of extreme swelling. I had one such episode last year and thought I'd break out of my skin. I was HUGE. It lasted maybe a week and a half. I then went back to being my "normal" self - meaning only the leg and foot/ankle edema and some (but not bad) abdominal swelling. The only body parts not affected seem to be the arms,(NOT hands), the neck, and the face. I am on a bunch of meds which could be responsible for it. One or more of my health issues could be causing the edema(s) as well. This is why it is hard to tell what's what. My legs are swollen all the time. I am going through another one of those episodes of extreme swelling right now. The edema makes it difficult to breathe, worsens my nausea to the point of vomiting, and creates a lot of extra pressure, aches and pains. Of course, nobody really knows what exactly is causing it - the meds, the health issues, or both. I am getting tired of carrying that extra weight around and feeling so miserable. It's been a couple of weeks now. :(
Sorry for venting. I feel better already! I will try to learn more about this condition. It's good to know it exists.
As for albumin levels, my microalbumin is really high, BUT I have impaired kidney function. So, again, hard to tell.
P.S. I did some reading - one article was an interesting 9 year study of eight patients with this condition by a famous clinic. They were followed from the admission, through treatment, subsequent episodes of CLS, changes in medication, complications etc. over the years. Most are doing fine. :) A couple of photos and drawings were provided. In one, a cross section of a muscle affected by CLS could be seen, clearly showing the compression of the nerves and blood vessels. In another, a face of a person with acute CLS.
Is the face ALWAYS involved in each episode?
How low does the systolic blood pressure drop during a CLS episode? Is the hypotension fleeting, and does the blood pressure normalize afterwards?
Sorry about the questions.
There was also a comment about how in most cases this condition is underdiagnosed, due to its rarity and because the ER doctors are not familiar with it.
flowergirl
Allen1983
08-08-2008, 12:07 PM
Dear Walt,
It's good to hear from you. I was impressed to hear that you had managed to get our of your braces. I've had some good PT's but unfortunately the damage from the cuts made from my fasciotomies was too severe for things to work out for me. I use a carbon AFO which slips under an orthodic in my shoe so there's no contact with my foot. I do lots of walking and biking so I can get around easily in them. I even hiked part way down the Grand Canyon 2 years ago with them! I will ask my doctor about aminophylline. So far the theophlylline does not cause me any problems though like you I have a hard time getting enough sleep. I did get 6 hours last night so I feel great today. I work as a library director for a group associated with the US Dept of State, the National Endowment for Democracy here in Washington. I still travel in the US and Canada though I don't do much foreign travel anymore. I was supposed to go to Ukraine in April but had to cancel the trip because I had a small episode and the heath care there is questionable...the guide book said to check to see if you're doctor had alchohol on his breath before operating...I said forget it I'm not going! ha ha! Take care of yourself and I'll check the Board more frequently. Best, Allen
It's good to hear from you. I was impressed to hear that you had managed to get our of your braces. I've had some good PT's but unfortunately the damage from the cuts made from my fasciotomies was too severe for things to work out for me. I use a carbon AFO which slips under an orthodic in my shoe so there's no contact with my foot. I do lots of walking and biking so I can get around easily in them. I even hiked part way down the Grand Canyon 2 years ago with them! I will ask my doctor about aminophylline. So far the theophlylline does not cause me any problems though like you I have a hard time getting enough sleep. I did get 6 hours last night so I feel great today. I work as a library director for a group associated with the US Dept of State, the National Endowment for Democracy here in Washington. I still travel in the US and Canada though I don't do much foreign travel anymore. I was supposed to go to Ukraine in April but had to cancel the trip because I had a small episode and the heath care there is questionable...the guide book said to check to see if you're doctor had alchohol on his breath before operating...I said forget it I'm not going! ha ha! Take care of yourself and I'll check the Board more frequently. Best, Allen
Allen1983
08-08-2008, 12:18 PM
Hi flowergirl,
It was good to see you join our discussion on Capillary Leak though I'm sorry to read that you have had so many issues with it recently. The swelling is a classic sign of trouble for me. And it happens in the face for me. The first tim my systolic blood pressure dropped a lot. It tells me that I need to slow down and rest. So far I am lucky and have only had one minor episode in April and I've had the condition for nearly 6 years now. You should contact the folks at Mayo, Dr. Hayman or Griepp in Hematology. They are the experts there! I take 500 mg of theophylline twice daily and it seems to work for me. Also my MGUS protein which all of us with CLS have has not increased since I was diagnosed so that's good news. The doctors at Mayo think that the theophylline somehow controls the protein. Are you on any medications for the condition? You take care yourself. Allen
It was good to see you join our discussion on Capillary Leak though I'm sorry to read that you have had so many issues with it recently. The swelling is a classic sign of trouble for me. And it happens in the face for me. The first tim my systolic blood pressure dropped a lot. It tells me that I need to slow down and rest. So far I am lucky and have only had one minor episode in April and I've had the condition for nearly 6 years now. You should contact the folks at Mayo, Dr. Hayman or Griepp in Hematology. They are the experts there! I take 500 mg of theophylline twice daily and it seems to work for me. Also my MGUS protein which all of us with CLS have has not increased since I was diagnosed so that's good news. The doctors at Mayo think that the theophylline somehow controls the protein. Are you on any medications for the condition? You take care yourself. Allen
flowergirl2day
08-09-2008, 01:35 PM
Hi Allen,
thank you for your post. I am just looking for answers. There never seem to be any. I am so glad I know about this condition, thanks to reading this thread. I am not on any medication for this, as I don't know what the problem is. That is still being looked into. I take meds for my health issues, and wish so much I didn't have to. While treating one condition, they seem to create many other problems. Taking the drugs is like playing with a two-edged sword.
I experienced a similar episode last summer. I was given an extra dose of diuretics (in addition to my usual two types). They did not seem to help any. This time adding a third, potent one didn't work at all - I am on three types of diuretics right now. Maybe I'll have to wait longer and give it a chance to work. I've been taking the third one for a week. This swelling seems more severe and very stubborn. (over 2 weeks). I am very swollen right now, especially in the abdominal area. There's nothing visible in the face or arms. The key is to wait for the necessary testing without becoming too frustrated. I took a few days off work and am, well, waiting. I hope I won't have to wait too long!
While reading a little bit about this condition, I saw and researched the fasciotomy. Though it must be a terrible relief once it's done (I know how much being swollen can hurt), I wonder how long it takes for the scars and the nerves to heal, and whether a normal function of the muscles can be restored. It We do what we have to and then it's full speed ahead, albeit with a few stumbles.
I am glad to hear you are doing well and keeping active. That's the spirit! I wish you and everyone with this condition the best of luck. Many thanks for the information!
flowergirl
thank you for your post. I am just looking for answers. There never seem to be any. I am so glad I know about this condition, thanks to reading this thread. I am not on any medication for this, as I don't know what the problem is. That is still being looked into. I take meds for my health issues, and wish so much I didn't have to. While treating one condition, they seem to create many other problems. Taking the drugs is like playing with a two-edged sword.
I experienced a similar episode last summer. I was given an extra dose of diuretics (in addition to my usual two types). They did not seem to help any. This time adding a third, potent one didn't work at all - I am on three types of diuretics right now. Maybe I'll have to wait longer and give it a chance to work. I've been taking the third one for a week. This swelling seems more severe and very stubborn. (over 2 weeks). I am very swollen right now, especially in the abdominal area. There's nothing visible in the face or arms. The key is to wait for the necessary testing without becoming too frustrated. I took a few days off work and am, well, waiting. I hope I won't have to wait too long!
While reading a little bit about this condition, I saw and researched the fasciotomy. Though it must be a terrible relief once it's done (I know how much being swollen can hurt), I wonder how long it takes for the scars and the nerves to heal, and whether a normal function of the muscles can be restored. It We do what we have to and then it's full speed ahead, albeit with a few stumbles.
I am glad to hear you are doing well and keeping active. That's the spirit! I wish you and everyone with this condition the best of luck. Many thanks for the information!
flowergirl
messie
08-15-2008, 04:53 PM
Hi everyone,
Im really glad we can all chat and share our experiences. This is great to have a message board where more people can read about us. Im doing well, and I will try to get on more often. Ive been printing out what everyone's been talking about so I can keep a record and show my doctor what everyone else is going thru.
Take care, Kathy
Im really glad we can all chat and share our experiences. This is great to have a message board where more people can read about us. Im doing well, and I will try to get on more often. Ive been printing out what everyone's been talking about so I can keep a record and show my doctor what everyone else is going thru.
Take care, Kathy
flowergirl2day
08-18-2008, 12:52 AM
Hello Messie,
even though they say that the capillary leak syndrome is rare, it is starting to look that perhaps it is not as rare as it is thought to be.
Do you suffer from this condition? If so, would you mind sharing what has led to your diagnosis (symptoms, mostly). We know it is a condition that's difficult to diagnose, unless one has a very good doctor and a LOT of luck.
FG
even though they say that the capillary leak syndrome is rare, it is starting to look that perhaps it is not as rare as it is thought to be.
Do you suffer from this condition? If so, would you mind sharing what has led to your diagnosis (symptoms, mostly). We know it is a condition that's difficult to diagnose, unless one has a very good doctor and a LOT of luck.
FG
Walt CLS
08-20-2008, 12:20 AM
Hello everyone,
Allen, I waited to get back on the board until the Singulair I quit taking was out of my system. It has been 9 days and I feel great. I am actually sleeping well at night and no naps during the day. They will test the blood next week to check the levels. I am guessing that the Singulair does not help but may hurt. I'll keep you posted. I am only on Terbutaline and aminophyline now. My new experience with hayfever seems to be going away too.
To flowergirl2day:
I don't swell until I am quite into the CLS. My blood pressure is lower than 80 over 60 in CLS. My BP cuff can not read any lower and the parametics can't read it either. I only go to the ER if it drops sudden and I am tired.
My legs do not swell since the first time. I have no feeling from the calves down. I have to watch when I drop a knife in the kitchen. Never know what may be sticking into the foot.
I have had a few incidents this year, but not much swelling. For me, the kydneys go first into a fail mode. I try to get to the ER early before this. I only swell slightly in the forearms.
We all seem to have a lot of similar effects and symptoms. Like Messie said, there are a lot of people who die from CLS each year, but it never was known. I went 3 years before I knew it was CLS.
They thought it was a virus migration and then I went into septic shock my first time.
I hope you don't have it. We are all going to be watching for flews shortly. I had a person go home sick today. Never thought I would be worried to death (literally) about such things.
Allen, I waited to get back on the board until the Singulair I quit taking was out of my system. It has been 9 days and I feel great. I am actually sleeping well at night and no naps during the day. They will test the blood next week to check the levels. I am guessing that the Singulair does not help but may hurt. I'll keep you posted. I am only on Terbutaline and aminophyline now. My new experience with hayfever seems to be going away too.
To flowergirl2day:
I don't swell until I am quite into the CLS. My blood pressure is lower than 80 over 60 in CLS. My BP cuff can not read any lower and the parametics can't read it either. I only go to the ER if it drops sudden and I am tired.
My legs do not swell since the first time. I have no feeling from the calves down. I have to watch when I drop a knife in the kitchen. Never know what may be sticking into the foot.
I have had a few incidents this year, but not much swelling. For me, the kydneys go first into a fail mode. I try to get to the ER early before this. I only swell slightly in the forearms.
We all seem to have a lot of similar effects and symptoms. Like Messie said, there are a lot of people who die from CLS each year, but it never was known. I went 3 years before I knew it was CLS.
They thought it was a virus migration and then I went into septic shock my first time.
I hope you don't have it. We are all going to be watching for flews shortly. I had a person go home sick today. Never thought I would be worried to death (literally) about such things.