Greetings,

my name is David Gray and I have been a member of this group for quite a while, but have not made introductions or participated until now.   I believe I have had SCLS or something nearly identical to it, since 1993, following an infection post vasectomy, I have a very long story to tell which supports this conclusion, which includes going through a dramatic acute phase before having a brief remission and then settling into a chronic pattern (around 1998 or so). A pattern which has only gotten worse over time (including ICU visits following BP crashes where they would spend most of their time trying to treat me for sepsis until all cultures would come back negative).

I have a long history of blood tests in my possession which tend to support my conclusions (along with the history I can relate later), with the exception of albumin levels.

Mu urgent question is that I  will be seeing my PCP tomorrow, and this will include blood tests.  I know there are specific things which should be checked for since they would tend to support SCLS as a diagnosis, I am just positive what they are.  I know this is not the correct terminology, but I just completed what I call the drain phase, where most (but not all) of the fluid is drained (peed) away/- these phases have tended to be shorter over time and now last anywhere from a few  days to a week or so.   I am about two days into what I call the swelling phase, which may last anywhere from 3-6 weeks.  Drugs such as Lasix become completely ineffective at draining away anything.

Over time the amount of fluid and swelling has increased first mostly causing my legs below my knees to swell, then my thighs and up into my lower abdomen where it would cause great back paiin, then my upper abdomen where I believe it is affected organ function (The blood test tomorrow where prompted when being treated for a slow healing corneal abrasive he noticed that I looked jaundiced, and wondered about my liver function- so that will be one thing tested (I have to agree that something is going on as my response to my pain medications, which I've been on for 18 years in some cases has changed dramatically, I fear this may be a complication of the very long term SCLS.

so the basic question I am seeks an answer for quickly is what special things (boxes checked on the Quest lab test form) should be tested for (I would have asked sooner, but my ophthalmologist appt was today, my already scheduled appt with my PCP is 10AM tomorrow (Friday)

If anyone has an answer I would extremely grateful.

Thanks 

David Gray

David,

Have them test your Hemoglobin and Albumin levels, then write to me offline at aporzeca@american.edu for additional suggestions on what you can do to get to the bottom of your situation.

Arturo

Thank you I will, I appreciate you taking the time to answer.

David, Arturo,

I nearly wept to see a description so similar to my Chronic SCLS journey. The attack, the brief remission, the slow increase in the duration of edema, the slow increase and advance of the edema from the feet up the legs, abdomen, epigastric region until it looks like a 7-month pregnancy. The discomfort of waiting for enough of the tissue swelling to return to the vein for the kidneys engage. The discomfort in the flank region as the kidneys work overtime. The very short interval, sometimes mere hours, for the swelling to return.

Arturo,

Please share any information that you can so that I can update Mass General Immunology, UF Shands Teaching Hospital and Maine Medical Center. [I am a snowbird.] 

Should these similar sets of symtoms be shared with Dr. Druey at NIH?

Susan Harrington Tedrick

Arturo,

though I will also write to you off line, I must add that on Tuesday morning I was taken to a local hospital (it's Thursday night).  Apparently I had been walking around for a while with a hematocrit of around 2.3ish (which doctors seemed to be rather amazed at), but seems to account for the shortness of breath and other symptoms I was experiencing. (SCLS seems to provide the ability to accomplish things at lowers extremes, such as low BPs, than many people). So far I have been transfused with 7 or 8 units of blood and my hematocrit is just rising above 6.5ish.   I had an endo in my upper gi done earlier today, finding two tiny lesions, and have a full on lower GI set for tomorrow (after tonight's wonderful prep).  However, after the experience with my gastric bypass in  '96, when they found my abdomen completely full of adhesions (as if I had been in a major abdominal accident or trauma was how the surgeons described it).  I am not sure how I should describe or prepare those doing the endoscopy, and/or if the find (likely) damage during this procedure- anything to be prepared for(??).   I have discovered through the years that I am NOT a n ideal surgical candidate.   Thank you in advance.   Dave Gray

Arturo,

though I will also write to you off line, I must add that on Tuesday morning I was taken to a local hospital (it's Thursday night).  Apparently I had been walking around for a while with a hematocrit of around 2.3ish (which doctors seemed to be rather amazed at), but seems to account for the shortness of breath and other symptoms I was experiencing. (SCLS seems to provide the ability to accomplish things at lowers extremes, such as low BPs, than many people). So far I have been transfused with 7 or 8 units of blood and my hematocrit is just rising above 6.5ish.   I had an endo in my upper gi done earlier today, finding two tiny lesions, and have a full on lower GI set for tomorrow (after tonight's wonderful prep).  However, after the experience with my gastric bypass in  '96, when they found my abdomen completely full of adhesions (as if I had been in a major abdominal accident or trauma was how the surgeons described it).  I am not sure how I should describe or prepare those doing the endoscopy, and/or if the find (likely) damage during this procedure- anything to be prepared for(??).   I have discovered through the years that I am NOT a n ideal surgical candidate.   Thank you in advance.   Dave Gray

Arturo,

though I will also write to you off line, I must add that on Tuesday morning I was taken to a local hospital (it's Thursday night).  Apparently I had been walking around for a while with a hematocrit of around 2.3ish (which doctors seemed to be rather amazed at), but seems to account for the shortness of breath and other symptoms I was experiencing. (SCLS seems to provide the ability to accomplish things at lowers extremes, such as low BPs, than many people). So far I have been transfused with 7 or 8 units of blood and my hematocrit is just rising above 6.5ish.   I had an endo in my upper gi done earlier today, finding two tiny lesions, and have a full on lower GI set for tomorrow (after tonight's wonderful prep).  However, after the experience with my gastric bypass in  '96, when they found my abdomen completely full of adhesions (as if I had been in a major abdominal accident or trauma was how the surgeons described it).  I am not sure how I should describe or prepare those doing the endoscopy, and/or if the find (likely) damage during this procedure- anything to be prepared for(??).   I have discovered through the years that I am NOT a n ideal surgical candidate.   Thank you in advance.   Dave Gray

Arturo,

though I will also write to you off line, I must add that on Tuesday morning I was taken to a local hospital (it's Thursday night).  Apparently I had been walking around for a while with a hematocrit of around 2.3ish (which doctors seemed to be rather amazed at), but seems to account for the shortness of breath and other symptoms I was experiencing. (SCLS seems to provide the ability to accomplish things at lowers extremes, such as low BPs, than many people). So far I have been transfused with 7 or 8 units of blood and my hematocrit is just rising above 6.5ish.   I had an endo in my upper gi done earlier today, finding two tiny lesions, and have a full on lower GI set for tomorrow (after tonight's wonderful prep).  However, after the experience with my gastric bypass in  '96, when they found my abdomen completely full of adhesions (as if I had been in a major abdominal accident or trauma was how the surgeons described it).  I am not sure how I should describe or prepare those doing the endoscopy, and/or if the find (likely) damage during this procedure- anything to be prepared for(??).   I have discovered through the years that I am NOT a n ideal surgical candidate.   Thank you in advance.   Dave Gray

Arturo,

though I will also write to you off line, I must add that on Tuesday morning I was taken to a local hospital (it's Thursday night).  Apparently I had been walking around for a while with a hematocrit of around 2.3ish (which doctors seemed to be rather amazed at), but seems to account for the shortness of breath and other symptoms I was experiencing. (SCLS seems to provide the ability to accomplish things at lowers extremes, such as low BPs, than many people). So far I have been transfused with 7 or 8 units of blood and my hematocrit is just rising above 6.5ish.   I had an endo in my upper gi done earlier today, finding two tiny lesions, and have a full on lower GI set for tomorrow (after tonight's wonderful prep).  However, after the experience with my gastric bypass in  '96, when they found my abdomen completely full of adhesions (as if I had been in a major abdominal accident or trauma was how the surgeons described it).  I am not sure how I should describe or prepare those doing the endoscopy, and/or if the find (likely) damage during this procedure- anything to be prepared for(??).   I have discovered through the years that I am NOT a n ideal surgical candidate.   Thank you in advance.   Dave Gray

Arturo,

though I will also write to you off line, I must add that on Tuesday morning I was taken to a local hospital (it's Thursday night).  Apparently I had been walking around for a while with a hematocrit of around 2.3ish (which doctors seemed to be rather amazed at), but seems to account for the shortness of breath and other symptoms I was experiencing. (SCLS seems to provide the ability to accomplish things at lowers extremes, such as low BPs, than many people). So far I have been transfused with 7 or 8 units of blood and my hematocrit is just rising above 6.5ish.   I had an endo in my upper gi done earlier today, finding two tiny lesions, and have a full on lower GI set for tomorrow (after tonight's wonderful prep).  However, after the experience with my gastric bypass in  '96, when they found my abdomen completely full of adhesions (as if I had been in a major abdominal accident or trauma was how the surgeons described it).  I am not sure how I should describe or prepare those doing the endoscopy, and/or if the find (likely) damage during this procedure- anything to be prepared for(??).   I have discovered through the years that I am NOT a n ideal surgical candidate.   Thank you in advance.   Dave Gray

Arturo,

though I will also write to you off line, I must add that on Tuesday morning I was taken to a local hospital (it's Thursday night).  Apparently I had been walking around for a while with a hematocrit of around 2.3ish (which doctors seemed to be rather amazed at), but seems to account for the shortness of breath and other symptoms I was experiencing. (SCLS seems to provide the ability to accomplish things at lowers extremes, such as low BPs, than many people). So far I have been transfused with 7 or 8 units of blood and my hematocrit is just rising above 6.5ish.   I had an endo in my upper gi done earlier today, finding two tiny lesions, and have a full on lower GI set for tomorrow (after tonight's wonderful prep).  However, after the experience with my gastric bypass in  '96, when they found my abdomen completely full of adhesions (as if I had been in a major abdominal accident or trauma was how the surgeons described it).  I am not sure how I should describe or prepare those doing the endoscopy, and/or if the find (likely) damage during this procedure- anything to be prepared for(??).   I have discovered through the years that I am NOT a n ideal surgical candidate.   Thank you in advance.   Dave Gray

Arturo,

though I will also write to you off line, I must add that on Tuesday morning I was taken to a local hospital (it's Thursday night).  Apparently I had been walking around for a while with a hematocrit of around 2.3ish (which doctors seemed to be rather amazed at), but seems to account for the shortness of breath and other symptoms I was experiencing. (SCLS seems to provide the ability to accomplish things at lowers extremes, such as low BPs, than many people). So far I have been transfused with 7 or 8 units of blood and my hematocrit is just rising above 6.5ish.   I had an endo in my upper gi done earlier today, finding two tiny lesions, and have a full on lower GI set for tomorrow (after tonight's wonderful prep).  However, after the experience with my gastric bypass in  '96, when they found my abdomen completely full of adhesions (as if I had been in a major abdominal accident or trauma was how the surgeons described it).  I am not sure how I should describe or prepare those doing the endoscopy, and/or if the find (likely) damage during this procedure- anything to be prepared for(??).   I have discovered through the years that I am NOT a n ideal surgical candidate.   Thank you in advance.   Dave Gray

Arturo,

though I will also write to you off line, I must add that on Tuesday morning I was taken to a local hospital (it's Thursday night).  Apparently I had been walking around for a while with a hematocrit of around 2.3ish (which doctors seemed to be rather amazed at), but seems to account for the shortness of breath and other symptoms I was experiencing. (SCLS seems to provide the ability to accomplish things at lowers extremes, such as low BPs, than many people). So far I have been transfused with 7 or 8 units of blood and my hematocrit is just rising above 6.5ish.   I had an endo in my upper gi done earlier today, finding two tiny lesions, and have a full on lower GI set for tomorrow (after tonight's wonderful prep).  However, after the experience with my gastric bypass in  '96, when they found my abdomen completely full of adhesions (as if I had been in a major abdominal accident or trauma was how the surgeons described it).  I am not sure how I should describe or prepare those doing the endoscopy, and/or if the find (likely) damage during this procedure- anything to be prepared for(??).   I have discovered through the years that I am NOT a n ideal surgical candidate.   Thank you in advance.   Dave Gray

Apologies for seemingly hitting the save button multiple times

postung from my phone in Hospital 

Much more information about my journey with this is in my profile