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I’m new here :). Looking for help

Beccaj50 Message
3 Aug 2021, 08:00 PM

Hi all! I am looking for treatment help.  Mayo Clinic diagnosed this as a possible condition for my symptoms.  Does this sound like anyone else's story?  

I have pitting edema that goes from my feet to my knees and to a lesser degree in my hands and arms...even my abdomen feels like its full of water too!  That fortunately seems to improve when I urinate.  Sometimes it feels like my whole body just gets fatter overnight!  I have serious fatigue.  I get a lot of stuffy noses.  Night sweats (drenched).  Periodic headaches (also dx with migraines and  intercranial hypertension ICH).  I also get kidneys pain throughout the day.  Some times muscles twitch (the big muscles twitching).  I also experience this sensation like I am either (1) about to pass out, (2) wave of nausea or (3) hunger...its weird to explain but sometimes I feel all three...they tell me this is panic attacks??  

I have serious intolerance to STRESS, HEAT, ALCOHOL and ACTIVITY.

Any advice would be appreciated :) 

Beccaj50 Message
3 Aug 2021, 08:05 PM

Oh and I get diarrhea several times a week...

stedrick Message
4 Aug 2021, 01:57 PM

Becca,

My SCLS is of the chronic form. I experience a few of your symptoms.

  • pitting edema from feet to abdomen
  • overnight bloating due to the edema leveling while lying flat
  • serious fatigue

May I ask what country you reside in?

Susan

Susan Harrington Tedrick, JD

Beccaj50 Message
4 Aug 2021, 05:30 PM

Hi Susan!  

First, I am so sorry for your suffering.  These symptoms can make life quite miserable, disabling and even scary at times.  I'm in Tallahassee, Florida :).  I, too, think I have some chronic type version if my problems are indeed SCLS.   

Where are you and are you in treatment?  

stedrick Message
5 Aug 2021, 04:57 AM

Small world! I have a home in the Micanopy Historic District and get IIVIG infusions in Gainesville at UF Shands. I've been isolating in Maine since the first news of COVID, but hope to return to Florida in the winter. My infusions are at a small hospital, but my emergency hospital is Mass General in Boston.