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?
Thanks,
Wendy x
You say your primary lymphoedema is not immediately obvious. Don't panic, it could stay like that! People often assume their lymphoedema will get worse, this is not necessarily so. Sounds like you have lots of medical conditions to deal with. They are extremely unlikely to be linked to primary lymphoedema. The Lymphoedema Support Network, lymphoedema.org , has lots of information and follow the advice of your clinic. Managing lymphoedema is a hassle but many of us carry on pretty much as normal. I do hope you can come to terms with your lymphoedema in the not too distant future. Best wishes.
Thanks! This site is a great help and speaking to others with the same condition! Wendy