Hi guys, I posted almost a year ago when I was first diagnosed with Primary Lymphedema at age 44. The hospital repeated the scan this year due to extravasion (leaking) of the dye during my first scan. I was praying they had the diagnosis wrong & that it would all be a terrible mistake! How wrong could I be! 3 weeks ago I was told I have Primary Lymphedema in 4 limbs- arms & legs and that it’s worse in my arms! I am devastated!!! At the moment it’s not immediately obvious that I have this condition but I’m scared of it getting worse! The only treatment I currently have is the stockings for my legs. I have seen the nurse twice who has measured my legs & ordered more stockings but that seems to be it. A life long condition that is not curable!
I am also under the hospital being investigated for a hormonal imbalance! High prolactin (above the normal range) & low DHEA & testosterone (below the normal range). I am waiting for the results from a Pituitary MRI. I constantly get infections; my eGFR and Creatinine (kidneys) are out of the normal range; I have 5 fibroids & a nodule on my thyroid & cant help thinking could my Lymphedema be the cause of my many other symptoms?
I get peripheral blurry vision at times, which is like watery ripples! More recently I have had approx 5 episodes of feeling like my left foot is standing in water, but my foot and shoe is dry? In addition to getting right hand twitches / spasms!!
I have no idea what is wrong with my body & neither do the consultants who just keep sending me for test after test! The worst symptom of all is EXTREME FATIGUE!!!!
Is anyone else experiencing a range of symptoms you think might be related to your Lymphedema? Or any suggestions on what might be causing all my symptoms?