Lymphedema Community
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URGENT-How can you tell if Lymphedema is actually something else?

My doctor diagnosed my with hereditary lymphedema 20 years ago. He never ran any tests on me - he based this solely on the fact that my oldest sister has the condition. I have noticed overtime it has very slowly gotten slightly worse which I had anticipated. However, in the past 6-12 months there has been a significant progression of swelling - from being confined mostly to my ankle and foot for 19 years to spreading up my legs to my buttocks and abdomen in the past year alone. I have also noticed this past week that my fingers are slightly swollen when I wake up. I am very concerned as my family and I no longer believe it to be lymphedema. However, if it were heart or kidney related, I don’t think I could still be living 20 years later. This sudden progression of my symptoms is impacting my life significantly. It’s hard to walk up and down stairs as it feels as though my skin will split even more. I rarely go anywhere as it’s hard to find shoes to fit my feet anymore. It’s hard to look at them or have people yell things like, “OMG WHATS WRONG WITH YOUR FEET!!!” It’s hard to see nice heels or boots only to realize your foot will never get into them. My family is worried and, though I reassure them and try to minimize the effect it has on me, so am I. If any medical experts or other individuals who have experienced this see this/my question, I would appreciate any feedback, suggestions, advice or solid information you have to offer. Thank you very much.

Personal Information:
-40 year old Black female
-5’5”, ~250lbs
-low level of physical activity
-been diagnosed with PCOS, Lymphedema, Absence Seizures
-On a wait list for a sleep study to address an unknown sleeping disorder
-had a Radical Breast Reduction at age 18
-had a tonsillectomy at age 26
-took hydrochlorothiazide 25mg for Lymphedema swelling as needed for 10 years

*Any further info required please send me a direct message identifying yourself and your credentials if applicable. Thank you.
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