Hi I had a lymphoscintigraphy in June 2017 due to swelling in my ankles and legs - bilaterally. I am under St Georges Lymphedema Clinic as they suspected I have Primary Lymphedema (genetic defect). I wa told that my results would go to a multidisciplinary panel to interpret. They wrote to me on the 06/11/2017 to give me their findings. They state:
"We noted that there was extravasation of dye during the test making it slightly difficult to interpret" - should I ask them to re-do the test???
"However, we do feel there was an aberrant lymph node in the left shin region, raising the possibility of Lymphedema". - do I have Lymphedema or not? What is an aberrant lymph node - google says it's a melanoma should I be scared? Should I be having a biopsy???? Letter sent with no advice??
"The delayed images did not show any further rerouting" - what does this mean?
"But there was very poor uptake of dye within the lymphatic vessels within both legs. Inguinal lymph nodes were picking up the dye that was injected in her feet, but function was significantly reduced. This was confirmed on the quantification figures which demonstrated significantly impaired lymphatic drainage as only 1.4% of the dye in her right foot reached the inguinal lymph nodes in the right groin after 2 hours, and 2.6% of the dye injected in her left foot reached the left groin nodes after 2 hours (12% is considered normal)".
What I find confusing is then they say the following:
They discussed my case "in the context of her lymph scan and conclude that her lower limb Lymphedema is due to a birthmark weakness of the lymphatic system I.e primary Lymphedema".
They say "the pattern of her lymph scan does not fit with any of the known genotyped primary Lymphedemas, in other words we cannot offer her a blood test to confirm this is a primary Lymphedema due to one of our known genetic mutations."
However, they have offered for me to take part in their geonome study "to try and discover the underlying genetic cause for her problems".
Is it just me who is confused by this letter??? So in summary they can't confirm I have primary Lymphedema??
Any thoughts or ideas would be helpful!!
Please I am so confused! Will take weeks if not months to get an appointment to speak the the consultant. I am worried about cancer!!
I was bitten and had a severe reaction 2 years ago in Mexico and they said I don't have secondary Lymphedema but this all started around the same time??!!
I look forward to hearing any thoughts / advice!
Thanks in advance!