Being diagnosed with SCLS, last year, i have an important question. i now am experiencing what we believe are not full-blown episodes of scls. I feel miserable and bloat terribly. Last week, same pattern, two days with cold like symptoms, then massive abdominal bloating. At the onset i increase my fluid intake and have bloodwork completed. Originally, i weighed 122 lbs, before my first episode.This was two years ago. After gaining 60 lbs of fluid, i recovered but only to end up at 128lbs. Second episode, 40 lbs fluid gain,then recovered to 135. Last hospitalization with 20 lbs fluid, recovered to 138lbs. i am now having smaller ones every two weeks. My weight at its worst this past month was 145. Presently, i am at 140 and very bloated. I look pregnant. My stomach always seems to get hit the hardest. and then my weight never quite returns to its former amount. At the end of January. my episode dragged out for 10 days. So wearyily, i called my internist which gave me a steroid injection and a medrol pack. This made me feel better. And the swelling was reduced. Last weekend it started all over. This gives me about 4-5 days of normalcy, before the next episode. My doctor called out lasix to pull off some fluid, but it doesn't seem to make a significant change. My bloodwork all looks good. Is there any patient with this same ongoing issue? I try to walk 30 minutes a day, but when i feel really bad, i am in bed just trying to breathe, from the pressure on my diaphragm. marilyn

sounds like what Judy Davis experienced with her leak pattern

I have been reviewing all of the history of this forum and i did see where Judy mentioned developing colitis and also a problem with caffeine. The swelling i have, has been going on for a year now. It comes and goes. I swell and then slowly go down again,( but not to a normal level, just to my new normal), only to repeat it once more. Today is my 10th day. Tomorrow i will make certain not to drink coffee. I did notice that when i felt well enough to have a cup, (well- being not overly bloated), i would get queasy not long after i had drank it. At first i thought it's just me being sensitive to the coffee, but now it makes perfect sense that it is actually aggravating the SCLS. I will continue to read our forum's history over the next couple of days, especially Judy's. Thank you so much for your advice. sincerely, marilyn

I was refering to the pattern of your leaking and that she had frequent mild leaking

HAVE YOU BEEN IN TOUCH WITH DR. GREIPP AT THE MAYO CLINIC?

I did contact him, but forgot to attach my posting. Thanks for reminding me. i just sent him another email with the info. sincerely, marilyn

I have the abdominal bloating, and my SCLS is more like yours, gradual and constant. I can start out in the morning feeling slim (tho the scales don't show it), and by 1 pm my stomach feels like it's pressing up under my ribcage. My weight 2 years ago was about 130, and I am at 160 right now. If the bloating is bad enough to affect your ability to breathe, Dr. Greipp should definitely be contacted - there has got to be something else that can be done. I am also trying to walk more, thinking that will help to get rid of some of the fluids, but most of the time I feel so heavy that it's a battle to do more than just walk to & from my car. On the up side, it does appear that between this site, Dr Greipp & Dr Druey, information is being shared, cases being studied, new treatments being introduced - there is a LOT of movement, and I am very encouraged that we will have some answers before long.

I am new to this site. 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 atleast once a week to have IV Lasix. Pill for never seemed to work. The 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 that they will do 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. Thank you for your time. Tim

Dear Tim, this sounds like scls to me. my first hospital visit, everyone was clueless. I had over 6 specialists on my case. They simply assumed it was a rare virus. a one time incident. But, when it occurred again almost a year later, my husband and sister had me moved to Houston, where my brother-in-law practices. He was able to get me in icu through another friend, since it was last minute. i had a cardiologist, a pulmonoligist, and a hematologist, on my case. My sister remembered coming across a medical article written by Dr. Greippe. And strongly urged the hemo. to look into it. He finally agreed, but disagreed on the type of SCLS, there is something similar but it comes on so suddenly almost like anaphylactic shock. These patients usually die because of the degree and severity of the episode which occurs in less than 24-48 hours. My three major episodes take about four days of symptoms,( cold ful like, muscle weakness, nausea), giving us enough time to monitor bloodwork, my bp, and then hospitalization with steroids and limited fluids. After this episode, i was then flown to mayo and diagnosed properly by Dr. Greippe. If you are not satisfied with your diagnosis in Houston, i strongly encourage you to make the trip to the Mayo clinic. It is rare, and little is known about it. So, often doctors just don't know anything about it. But, do get as much online info about scls and bring it with you to your appt. in H. Does your wife take any type of pain medicine? I think it is possible now that this is might be contributing to the fluid retention. I assume everyone is different. and i am on so many meds as it is. but i think the pain meds slow down everything in the process leading to the swelling. i am referring to the pregnant look, but my blood pressure is fine, and bloodwork is not showing anything out of spec. I do take colace to aid with constipation, but i may need to take magnesium also. not sure. i take pain meds for chronic nerve pain. i was in a bad carwreck, and have already had the steroid injections,tried anti-inflammatories, neurontin, physical therapy, acupuncture, then a cervical disc fusion. As of now, the two discs near the fusion or getting worse along with new bone spurs. I don't understand this weight gain issue, though. it is very discouraging, because your mobility is limited. and we must be active in order to stay healthy. i had been attending a gym three days a week, and was in great shape five years ago. right now i look like a pear. when i feel well enough, i try to walk 30 minutes, but it feels like i am carrying a 20 pound bag of potatoes. again, very discouraging when i look back at how strong i was before. ( i think it's a girl thing). I hope i was of some help. Please have your wife email me if she needs to vent. Maybe we can encourage another. I know it's difficult, not just physically, but mentally and emotionally. sincerely, marilyn maire602@aol.com m a i r e, not m a r i e

Thank you Marilyn. She does take pain meds. For a while she was getting steroid injections in her upper back and neck and I thought that was making the problem worse. She was diagnosed with Asthma when she was 9 months old. Many doctors say that the symptoms she is having now is just side effects of a lifetime of prednisone usage for her asthma. It went from a monthly thing to every couple of weeks to now...she always has fluid on her. She just limits her fluid and sodium intake. I feel like it has effected her mentally for obvious reasons but I feel that she doesn't get enough oxygen or blood flow to her brain. She was PTO president, Treasurer for 4H, Safety Coordinator for our local little league baseball and football. Along with this she put in over 40 hrs a week with her job which was accounting and demanding. She always had meals prepared when I got home. She would make blankets and stuff for friends who were having babies to not being able to put in more than a couple of hours at work then passing out. Now she is at home and in bed all of the time. When she does get up I'm on edge because I'm afraid she will faint. She is out before she hits the floor and never braces her fall. The other day she fell face first into the marble vanity in the bathroom blacking both eyes and cracking her nose. People probably think I abuse her or something because she is always bruised from her falls. I tried getting her into Facebook to get interested and motivated but she has lost interest in almost everything. We went on a cruise last March for our 19th anniversary. You can see her grow in the pictures.She took maternity clothes to get her through but had to by some big dresses in the bahamas. That was the last trip we took. The first few days was good but rest of her time was in her room for the most part. I'm glad we went last year because there would be no way we could afford it this year. Next week will be our 20th.

quick info: the disorder i was referring to earlier (when i said it was a type of scls) is called angioedema, not a form of scls. I am sure Dr. Greippe, if you were reading this was shaking your head at my medical error. Sorry about that. This explains why i don't have the title, DR. Marilyn. lol

Tim, If you are not already doing this, your wife should be wearing a helmet every time before she gets up. I would hate for her to get a concussion on top of everything else. Is she on any antidepressants? I presently am on a combination of three, which also treat anxiety. I have battled depression for years.(my mom, and her mother also) But, i never experienced anxiety until last year. i was in bed from Feb. until August. i literally had enormous trouble leaving my bedroom, much less my house. my bedroom felt like a cocoon. At that time, i was on terbutaline and theophylline, to control my scls. But, after 6 months of anxiety and depression But, i am soooo much better. Now, you are speaking to someone who was quite active before, not to the degree of your wife's volunteer work. But, just running errands, taking care of my family, shopping, and so forth. I am a mother of 7 children, and when i was younger, i home-schooled the older ones for 7 years. i gardened, made art, loved decorating, baking, and so forth. I did love life. But, emotionally i have lost my passion. I believe partly due to pre-menopause, chronic pain, and the battle of the mind- with my illness.. One thing my two close friends did was to come to my house every tuesday morning. No pressure, just a visit for about 1-2 hours. We would read the Bible and discuss stuff, share any new project we were working on, laugh and so forth. It really become something I would look forward to. We are social creatures and so often, hiding away might feel better at the moment but it's actually a detriment to us. Does she have a couple of close friends who would be willing to take the time to encourage her. I really believe this was a major turning point for me to get out of bed. Heck, sometimes i stayed in my pjs. She doesn't even have to get out of bed, they could all sit on the bed together. Go make them a pot of coffee and buy some grocery store pound cake to nibble on, and you're in business. I wouldn't ask her if she wants to do this, just do it. If you would have asked me last year, i would have said, "no". Because, it takes so much energy to even think of having to "entertain", but she doesn't have to do anything but be blessed by her friend's positive encouragement. I promise you, when my friends did this for me, my husband actually thanked them personally with tears in his eyes, because he saw me smiling. and that made his day. It's a baby step, i know. But, it really is huge in fighting this massive discouragement with our life. We are bitter and feel cheated, we feel guilty because we can't take care of our families the way we once did, and we feel hopeless dwelling on the thought of not ever getting better. I deal with this everyday of my life. Sometimes i win, and sometimes i feel beaten down. But, this much is true, my husband loves me more than he ever did, and i have a wonderful family and group of friends who care. I have felt purposeless for some time now. Unable to repay those who have helped us during these past 2 years. But, God has just given me another opportunity to serve others with whatever i am able to do, and right now i feel so blessed at the opportunity to encourage you and your wife. I can spend a lot of time thinking about me and that only makes it worse. When we can offer something to others who are in greater need, then there lies our purpose. tell your wife i said hello, sincerely, marilyn

It's sad but a relief to have someone that totally understands how this feels. She is on anti-depressants. She has never had problems with depression before. I've battled that and anger issues my whole life so I understand the benefit of medication but having someone that gets it and understands first hand is cool and just as helpful. 5 years of this has revealed who we can count on in life and sadly they are few and far between. If you have the flu or surgery or anything short term...a ton of people will be there to help but let it go into years and you find out who is real. I told my wife about her and I am trying to get her to send you an email. Her name is Amanda so if you get one from her I won. :) I appreciate your openness and willingness to help. Thanks, Tim

Tim, As far as anger goes, my husband can totally relate. He has also battled anger throughout his life, but over the years and with God, he has mellowed. But, this illness really puts a huge strain on him, because he can't "fix me". And to not be in control is very hard on him, as a husband. Or, even just as a man in general. It's natural for men to want to "fix" everything. My husband is not much of an emailer but possibly you two can hash this stuff out together. I think we all need support going through short term illnesses, but especially during long-term illnesses. Once i got out of the hospital, i would get so discouraged because, that was the "sprint" part of the race, but at home it becomes a "marathon". a very long one, i might add. So with that said, i will leave you with words from the apostle Paul: "and let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith.......so that you will not grow weary and lose heart. Hebrews 12:1-3 sincerely, marilyn

We need to be aware that all life-threatening illnesses like SCLS put enormous psychological and emotional stress on, or even cause life-long trauma to, not just the person who is ill, but also that they affect all those around the patient -- especially the principal care-giver, be it a spouse, a parent, a sibling or a child. Sometimes care-givers suffer as much or more than the loved one they look after, who is naturally the focus of medical attention, so care-givers too should also procure all the medical or psychological help they need -- and they should feel free to lean on family and friends for emotional support. A recent article in the medical journal "Cancer" last year focused on just one aspect of the damage done by life-threatening illnesses, which create "severe stress that may result in marital discord, separation, or divorce and may adversely impact treatment, quality of life, and survival." It found that in a sample of more than 500 married patients with a cancerous tumor or MS, divorce or separation occurred at a rate similar to that reported in the existing literature (12%), but women who were ill were 6 times more likely to be abandoned by their husbands than viceversa. And when divorce or separation occurred, the patient's quality of care and quality of life were seriously compromised. In my case, it took me more than a year to realize the serious psychological and emotional impact my illness was having on my family, and that I had to do something constructive about it. In the case of SCLS, in particular, the traditional (and not always effective) medications like Theophylline and Terbutaline cause nervousness, irritability and insomnia, and this can lead to belligerant and abusive behavior. In my view, patients who take them should routinely be prescribed a tranquilizer, besides something to help them fall asleep.

Thank you, for that insight. I know it definitely affects my husband and children to varying degrees. i have been blessed with a husband whose middle name happens to be "loyalty". I try to thank him each day for his goodness and patience with me. Situations like this can push you apart, or draw you closer. Fortunately, I can say it has done the latter in our marriage. This is not to say, that sometimes we don't occasionally pull away from one another on bad days, just because we all have that self survival instinct. So sometimes we just need to regroup,(whether that means prayer, or a day away, etc.) Am i making any sense? It's hard to describe how i feel about this issue. Anyway, we basically "refuel" and then come back together to unify ourselves against this situation in our lives. and that is all i have to say about that. (forrest gump) marilyn

Hi I am at NIH right now and I think I maybe in the second stage of a minor attack. If I find out anything that might help you I will post it. Take Care Rita

Thank you so much, Rita. Every little bit of info. helps us all out. marilyn

Tomorrow March 24 will be our 20th anniversary. We've been together for 27. We met in high school and have been together ever since. We have 3 sons; 18,14,7. This has been probably one of the biggest tests of our lives but thank God and Zoloft....I think I'm keeping it together for the most part. Loyalty is sadly a rare thing these days but I took my vows seriously and we have had every aspect of them tested. The bad thing about leaning on family and friend is that many grow weary after it goes into years. If this has not taught us anything else....we know who we can count on. We've been let down by people/family that we thought would see us through anything but at the same time we've seen people we didn't expect just pop up and shine. You're right, it effects us all. Frustration, anger, fear,and the list goes on.It's consuming and even lonely. Trying to keep that optimistic, strong, compassionate thing going 24/7 is a killer but what other choice do you have? Just bail on the one you love when they need you the most? What kind of example would I set for my sons? You have to just keep on keepin' on and have faith that God has a reason and he will see us through in HIS time. Yes your faith gets tested at times as well. I don't even know if SCLS is what she has but it's the closest thing I've seen yet. I would have thought that if our doctor her sent blood sample to the Mayo Clinic specifically looking for signs of Clarkson's syndrome then something would have come up but it seems that so little is known about it that it could easily been misdiagnosed once again. Anyway, that's my rant for the day. I gave your email to Amanda Marilyn but she's been feeling really bad this week. I think you could help her a great deal just knowing there is someone out there that has these problems and they are not crazy. I also told her to make a profile for this site or use mine. Hopefully soon she will be digging for answers. Thanks for all you guys do. Tim

First, congrats to you and Amanda! What a huge accomplishment, to celebrate 20 years together! (really 27) My husband and i fell in love at 17, and our anniversary will also be 27 years, married. Not many couples in today's world can claim that. Much less, ones that battle chronic illnesses. What you said about those you thought you could count on, but can't, and those that pop up out of nowhere to help. That's God. We have experienced this also. My family is hugely supportive, and unfortunately, i cannot say the same for his. You hear a lot of general remarks like, "call us if you need something." And you want to say, "whaaaattt? come on!" My wife is in bed 24/7. I think this eases their guilt and might make them feel better throwing out that offer. (i am guilty for doing it as well in the past.) I don't do that anymore. What i do is either, God will put something on my heart, and i try to be sensitive and act upon it immediately. Other times i offer help, but specific help, like "let me pick up your kids after school each day", or i'm going to the grocery store, give me your list and i will pick up yours as well." But, the bottom line is we don't want to have to ask for help. We don't want to bother others. It's easier for us to receive when someone just does it. I think sometimes people who veer away do so, because of fear. The closer they are to someone with this, they begin to question," if this could happen to Amanda and Tim, then it could happen to us or me?(any chronic illness) And then there are those that don't want to be bothered. Or be brought down because of the sadness of it all. ( i ve done that, too) I think from birth we are born selfish. it's just part of our human nature. But, God continues to show me, that when i think i will be the one to bless someone, i end up being the one blessed. People who choose to turn away are really missing an opportunity to be blessed by God through those in need. My husband, William, knows that just encouraging you two has done something for me. It's lifted my spirit. We all know the cliche, "there is always someone worse off than you", yada, yada, yada and so on. It's true, but This does not make anyone feel better, not even when i tell myself. But, Amanda is sicker than me. And instead of focusing on what i used to be able to do, i am focusing on today and what i can do. again, Happy Anniversary to you and Amanda. Your guys are awesome, truly. sincerely, marilyn

Man...you continue to blow me away with every response! You get it....you totally get it! Just reading this has blessed me. It almost takes a little weight off of my chest as I read your words and it's as if I wrote them myself. Finally someone out there knows exactly what this is like and even responds to it and others in the same way. Thank you for taking the time with me. You are truly an angel. I'm not going to get on a roll tonight but I had to say thank you. You're the first person in 5 years that nailed down how it is with no input from me on the emotional aspect. The one thing I will say for now is the cliches...no matter how true they are....get old and words are cheap, your actions are what matter in ways of offering help. In good and bad ways you and your husband sound very much like my wife and I. Thank you again. Tim

Just a new weird symptom. Three weeks ago, i was very bloated to the point i laid in bed on my side for several days, in order to get some pressure off my abdomen. i can never get comfortable when this happens and I'm just miserable. One evening, i felt less discomfort, and talked myself into going for a short walk with my husband. By the time i got to the end of the block, i could not go any further. When i do walk, my normal stretch is 30 minutes of brisk walking. This time, i couldn't even catch my breath. We headed back home, and William took my bp which was very low, and pulse very high. Over a period of 2-3 hours it slowly got into the normal range. The next morning, i was very short of breath, again lying on my side to get some breathing room. When my breathing became very shallow, William gave me an inhaler to help out. Two inhales, and my breathing slightly got better, but in 15 minutes i was in worse condition. I just tried not to panic and focus on breathing slowly. But, it continued to get worse. My face and ears became numb, then the numbness continued down my arms. My bp was low. I began to turn blue in the face and around the mouth. William called an ambulance and had to carry me to the gurney. the paramedics could not get a reading with the monitor, and tried to get an iv going, but also failed in that attempt. I did not improve until they put the Oxygen mask on me, which is like a leaf blower. I didn't have a choice but to get the O2 in my lungs. Slowly, my color returned, numbness gradually disappeared and then the para. were able to get a bp reading which continually rose as time passed. By the time I got to the hospital, i was still swollen, but breathing spasm had passed. WEiRD! My er doctor called my internist who immediately wanted iv fluids and a steroid shot given, but my husband refused until all bloodwork and ua results were in. Fortunately, everything came back normal. So, my husband made a good call at the time, rather than just treat me for SCLS. I was so thankful. Because, no one wants steroids, or extra fluid unnecessarily. right? The following am, i saw my internist. Besides the fluid, all my vitals were good. Breathing still not as deep as it could be. I asked him -how would he treat me for all this weight gain,(22 pounds in one year) and swelling if i had not been diagnosed with SCLS. To which he responded with ordering tests: first, a chest xray, the following week with a CT scan (with contrast) on the abdomen, and the next week an echogram of the heart. Everything came back normal.lungs clear, ( no fluid around organs, so the fluid seems to be in tissues only,)In fact, my heart which two years ago had been diagnosed with left ventricular hypertrophy(sp?) was now healed. Praise God for that!! My OBGYN, last week at my annual, did order a full panel on my thyroid. Still waiting on those results. I also am waiting on for my annual bloodwork results of the MGUS----electrophoreses,(sp?) No one can explain the whole breathing episode. Anyone have something like this? Just curious since the doctors have ruled out the normal stuff related to that. They think its related to the SCLS, along with this constant fluid. So tired of no answers.

I've been away from the forum for a while so sorry this took so long. Aside from the bloating what you describe is pretty close to what I usually experience in a more serious attack. The difficulty in walking is the first symptom I feel. When I start to have trouble breathing is my trigger to call an ambulance. Before I started IVIG treatments my legs felt weak most of the time, about once a week I had an attack serious enough to keep me home from work, and about once every couple of months serious enough to get me into the emergency room and ICU. Since I've started the IVIG treatments I've really had no symptoms to speak of.

Hi My legs getting weak is also the first sign of an attack. Lately I have been haveing minor leaks every three or four weeks. I get through them okay with out havng to miss work but I feel that they are slowly taking a toll on me. really good day seem far between. I am not as tried as I use to be, but the discomfort seems to be on going. I guess we all just need to hang in. Rita

Dear Rita: NO, you don't have to put up with frequent, minor leaks and the physical, emotional and financial toll they take. If you have SCLS and the traditional medications (theophylline and terbutaline) have not helped you, you can insist that your doctors give IVIG infusions a try. It's worked very well for many patients in Europe for a decade, and now also for several of us in the United States and Canada. They will have to persuade your insurance company to cover the high cost -- hospitals bill around $30-40,000 for the 2-day monthly outpatient infusion, and they get reimbursed about half of that -- and the companies are most likely to cover it if you've been running a lot of medical and hospitalization bills already. Check out the IVIG forum postings in this site and send me an emal (aporzeca@american.edu) if you or your doctors need more information.

I'll second Arturo's high regard for IVIG treatments. My first one was in the middle of a serious attack and I was released from the hospital the very next day. Since I've started I have little no no symptoms at all.

*_A very noticeable weakness in my legs_* when I first feel myself getting worse, followed by serious shortness of breath, worsening of already present abdominal swelling, calves and ankles swelling to max capacity - difficulty bending any extremity due to "tightness" of skin. Face and neck swell. Finally fluid in lungs backing up into right atrium and temporary heart failure (temporary assuming I get in the hospital with lasix IV and O2 full blast). Very interesting reading that other people have these symptoms, some of, which I've never mentioned to my doctors because I thought they would think I was "too focused on myself and every little quirk." After awhile I just got tired of hearing my own voice complaining and decided to just let the obvious speak for itself. No more reporting these "constitutional" complaints. I was determined not to appear to be weak or whiny. I doubted myself, became depressed, ashamed of not being able to get better. Quit talking to so many people in my life because it got too hard to hide that everything wasn't all sunshine with me. Waited till I was in heart failure with o2 sats in the 60's before having to call 911. No way was I going to bother another uninterested doctor or sit in another ER where they would look at me like I was a freak and talk to me as if I were an idiot. Then I met Dr. Jesse Penico, a transplant from New Orleans after Katrina - whole different kind of doctor. He eventually sent me to Mayo. I didn't set out to write all of this just now - the weak leg thing got my attention and I just got on a roll.

I am so saddened to see that we're all experiencing the same symtoms with little to no help at all. I am jealous of those with insurance. I lost mine after being laid off in Aug 2008 and have been battling not only SLCS, but the pricey bills that come with a specialist title. Although I do not have abnormal albumin levels or low blood pressure, I have experienced everything else (swelling, fatigue, decreased urine putout, back pain, nausea, etc), plus weight gain. I don't know about you guys, but my swelling episodes last for weeks at a time before going down. I never faint and my blood pressure never falls, in fact it's quite the opposite. For example, two weeks ago was when I started experiencing another ep and I gained a total of 16 pounds in just two weeks and my blood pressure actually raised b/c my body is not used to this yo-yoing. I still have not seen any relief on the swelling side. My poor little toes look like little sausages on a big sausage foot. And maybe I'm just having a pity party...but at least most of you are married, try being single at 28 and dating and having people think you're just fat when really about a year ago you were really healthy and skinny and now you're so self-concious you can't even go outside without pants on. I can't fit into most of clothes or most of my shoes. I haven't worn a skirt, capris, or a dress in over a year. I'm not the depressed type, but it really saddens me that I'm having to deal with this...as I'm sure all of you are as well. I wish there was a needle that the doctors could inject and just take out all of the fluid. :(

I just read this and my dear, I sooooo get everything you said. Trying to get dressed - knowing people think you're fat and having to wear pants in the heat of summer - it sucks. Yea - I am married and 47 - I can't imagine being only 28 and dealing with this sort of health problem. Everything you said in your post - I have thought it or said it. (including the part about just getting a needle and draining it all out! AAAHHHH) I love clothes or I used to - I would hang on to favorite things hoping to be able fit in them "after this latest episode" but in my case with every severe "blow up" and hospital stay -I never get down to what I was. I've recently just started giving my clothes and shoes away. But... I will tell you that I started on Theophylline recently and after doubling the dose - I can see the bones in my ankles and calves and feet! There is hope! Yea - I'm kinda short fused on this med but I take Ativan when I get too wired. Thank you for adding your thoughts to this forum. It blows my mind to read these stories - after ALL THESE YEARS - someone gets it!!!! Carole Thorn

Well, it's been almost two weeks since being released from the hospital for another SCLS episode. I was swollen, bp dropping and i began with the two days of cold like symptoms, thinking it was allergies or a virus. But, my breathing was shallow, and of course weakness. My husband had me go in with him for his appt. We have the same doctor. After checking my bp, our doctor concluded another episode was starting up. He admitted me right away to ICU. I then had a pic line put in my arm, which is much better than a central line. He had me on small amounts of dopamine, carefully controlled iv fluids, steroids, and even ivig. My icu stay, i think, was 3 days. I was out of it with the dopamine and the dilaudid for pain. Then i spent about 7 more days on the cardiac floor. My recovery was much better, but the last few days my headaches were horrible, most probably due to bp rising, and not yet continuing my bp meds soon enough. At one point the top number was 173. We began the benicar 2 times a day, and i headed home on Saturday. By Monday, i was getting around and on Tuesday i didn't even feel like i had been hospitalized at all. i think this was due to the very closely monitored iv fluids. My increase in weight at one point was only 15 pounds. So we are getting better in terms of fluid control.. i did get down back to my pre episode weight by the end of the week. But, i am still 20-25 pounds heavier than what i was last year. I do get frustrated with the excessive weight, the inability to fit in my clothes. So the first thing i did when i got home this time, was head to the store and buy new jeans, yes... they were 2 sizes bigger than what i once wore, but they fit. i even keep an eye out for "goodwill" maternity tops now, ( or empire style), and layer with little shrugs or lightweight sweaters. Trying to put on all my skinny stuff just depresses me. It's just not possible. i can't get the pants up over my hips and my shirts just show all my tummy rolls. There is no point in that. I just tell myself--- one day i will get back into them. But for right now, i need to look the best i can with the size i am at. I also need to stop apologizing for my present size to friends, even strangers. it's become a hangup. No one really wants to hear it. And it only makes me feel worse and makes them feel awkward. I hit Goodwill, Salvation Army, and Carehelp, now. I can find cute tops for three dollars. When i dress like this, in my new style, i feel better about myself instead of a victim with this whole SCLS thing. And because i feel better about me, i can get the focus off of myself and back on making someone else's day, cheering them up, or praying for them. It really is such a small thing, clothes...self-image, and yet it makes a huge difference on how we can affect others in our world. Take a negative and make a positive. We just have to get creative, instead of banging our heads up against the same wall. This isn't to say give up on exercise or eating right, but just tweak a few things when it comes to our clothes. This weight thing has had a hold on me for almost a year now. And i have always been quite proud of being thin. I had always assumed people who were heavy chose to be that way and didn't care. Now, i look at others and know that deep down they don't want to be large anymore than i do. They might even have health problems themselves. I don't judge anymore. i have empathy. So, my sweet friends, go to plan B. Get creative. Go check out some books at the library on "dressing right for your size". I just did that this week! Heck, make an appt. to see a therapist. i did that too. This is to help me deal with the whole shebang, not just clothes. but you get the idea. We have one life. Let's get out of this muck and mire and press forward. Our issues with this whole extra pounds has got to be put to rest. We are not living as long as we continue to hate this state we are in. i love you all. marilyn ps, can you tell i was a cheerleader in high school?

Marilyn.... I just want to say I smiled at your p.s... thank you... sounds to me like you are doing heaps to help feel good about yourself and you have also brought a smile to my face tonight after what has been a difficult day...another visit to my doctor with a mystery sore back.... (which was troubling me prior to my very first attack of ISCLS) and has appeared again. My blood pressure is extremely high 190/90 which is also a pattern and then drops very low... well you know I could go on and on... I won't.. Thank the Lord for this site and your posts, as I have said before this is a lonely journey at times however I still continue to look on this illness as a gift because lots of good has come out of it. Hang on in there my dear and God bless you, your posts and your family.... I know I could not keep on going on without my husband and family. Take care of your self Ruth Christchurch New Zealand

Ruth, i couldn't agree with you more about my husband and family being the reason i press on. Only someone with this rare disorder can truly understand the frustration, fear, anger, and loneliness that we experience, along with our families. I am also so thankful for this site. I can go see a psych to help learn how to cope with all of this, but i think this support group is truly the best thing for all of us. Only those who walk in our shoes can best relate. I'm glad i made you smile. I will keep you in my prayers, Ruth. Jesus knows our sufferings, and He has not forsaken us. I pray your bp will go down into a normal range, and that your back is healed. Remember when we are weak, He is strong. love, marilyn

Now you have brought tears to my eyes...Good ones though... I say the three F's are what keep me going Faith family and friends :-) Thanks again for you prayers Ruth :-)

Ruth, i was thinking about your back pain this morning. do you have mgus, as most of us do? i don't want to alarm you, but have you considered checking that part out. I know mgus can be a predecessor to multiple myeloma. i, myself have protein electrophoresis bloodwork done annually to make sure it is still in spec. I think if something like that might be going on, the sooner found the better. Or possibly, it could be spurs or degenerating discs, which would be the more obvious answer- and can be seen with an MRI. I have these in my neck. Very painful and chronic. Whatever it is, push through to find an answer. The sooner you find answers, the sooner you can address it, get some relief, and lift your anxiety. I hope i did not upset you. I just think not knowing is more frustrating than having answers so we can begin to deal with whatever issues surface in our lives. love, marilyn

Marilyn, Yes I do have MUGUS. I get tested regularly for possible signs of change. I was made aware of the MUGUS years back when I was experiencing painful joints. My father died from Multiple Myeloma at the age of 58 so that is why I had some tests done to see what was happening, back in 2000. My hematologist has ordered a CT( of my Renal area) scan as my bloods have come back ok at present. I am thinking after a session with the physio yesterday that it could well be bad posture due to the way I walk due to having to have my feet reconstrutured twice following my first acute attack of ISCLS. Also like you I have gained huge amounts of weight :-( (refer to Ruth Nolan's path on this site) So in short... Here's hoping this will fix my back pain and then just maybe my blood pressure will go down? 190/90 Tuesday 160/90 yesterday and I am back today to see what it is doing today... I do have a pattern of very high then really, really, really low before an attack so lets hope and pray that is not the case? Thanks for your concern Prayers heading your way Ruth