Hey everyone! I've had three life-threatening attacks (2002, 2018, and 2021) and an unknown number of "minor leaks." I've noticed several of you mention "minor leaks" in your posts. How are you defining a "minor leak?" I'm wondering if I'm currently having one . . . Below is a message I sent to Dr. Druey last night.
Hi there. I’m keeping a close eye on myself and just wanted to touch base.
I didn’t sleep well Thursday night but I was fatigued beyond normal yesterday (Friday). I’m still very tired today. I also noticed I was drinking more than usual all day yesterday. Less so today. Urine output is good. I felt a little off (brain foggy) when I was out this morning and decided to come home earlier than planned. I slept a little and ate a giant cookie which seemed to perk me up.
All this could be totally unrelated to SCLS. I did just complete a very stressful school year this week. It could be my body is just catching up. But I know these are early warning symptoms. I don’t have any others. I’ve been taking my blood pressure and it’s been normal to a little high. I haven’t been sick recently. No swelling. No stomach pain.
If anything changes we’ll go to the ER immediately. I will tell the docs there to call you right away.
I’m due for IVIG next Friday.
Is there anything else I should be doing?
Is it possible these "early warning symptoms" are a minor leak? I feel more normal right now (Sunday morning), but I still plan on taking it easy today. Before my other attacks, I noticed things like extreme fatigue and excessive thirst, but I just kept pushing myself. I had work and responsibilities. I also didn't know I had this crazy syndrome! I'm wondering if not slowing down was what turned minor leaks into a major attacks.
What have your experiences been? Thanks!
Jen
Jen,
Sorry to hear about what may be minor SCLS leaks, and I would have suggested that you should have your main physician contact Dr. Druey at NIH, because doctor-to-doctor consultations can be conducted at a higher level of medical precision, and in any case, you want to loop in your doctor because he/she would be best placed to follow upon the advice received, adjusting your medications and monitoring your situation.
There is such a thing as "chronic" SCLS, whereby patients experience very frequent but short-lived and light episodes most of which don't require hospitalization. They do affect one's quality of life because they are disruptive, and when it happens to SCLS patients who are receiving IVIG, then there is little else that can be done for them. For some examples of prior mentions of the problem here in
RareShare, check out the search "chronic SCLS" at https://rareshare.org/search?utf8=%E2%9C%93&search=chronic+scls&commit=Search
Good luck to you and please share what you learn!
Hello Jen,
This is how minor leaks have presented for me over the years. The leak usually begins with swelling in my calves, from there my legs may or may not also swell. This swelling has always been the first thing I feel, even before I feel any symptoms that I am fighting an infection. Usually within 3 days the swelling dissapates. During a minor leak I can still do physical activity, but I try to take it down to less strenuous activities like Yoga. Activities that are more strenuous exacerbate the leak. In the past, if the leak was accompanied with light headedness or if the swelling was felt in my arms, I knew it was going to be a significant leak and would go to the hospital for an extra infusion of IVigg. However, lately I am light headed more often than not, so I do not use that as a distinction between a mild or serious leak. If my blood pressure drops significantly or if light physical activity is hard and makes me breathless, I know I am having a serious leak. Over the years I have thought abut getting a hemacue machine to test my hemaglobin levels. I keep putting it off, but since I am leaking after every infusion it may be wise for me to get one and not count on listening to my body as the only way to distinguish if I am having a serious leak. I hope this helps.
Stay Well,
Cristina Burns