I wanted to update you on my progress since my last post, which was my very first in this forum. I am so grateful for all those who responded! It is great to get support and guidance.
So a brief recap and update here:
-I woke up with a very swollen left foot for no reason one morning at the age of 45
-Stress fracture was suspected (?) but ruled out after X-rays and MRI which just showed "subcutaneous swelling"
-Referred to a vascular surgeon who came up with a wild theory that my menopausal hormonal imbalances could be the reason for my swollen left foot and told I should take Ibuprofen a couple of days and it would "go away"
-Driven by my common sense who was telling me this has got to be "something lymphatic", I made a private appointment to have a lymphatic drainage massage by a therapist who is used to treating lymphedema and she said she was in no doubt whatsoever that I have lymphatic fluid in my foot and this is lymphedema (probably "primary lymphedema tarda"), that the vascular surgeon had no clue and was talking nonsense and she urged me to get medical attention to be properly diagnosed by a specialist, and have a lymphoscintigraphy scan done etc...
I have been battling with the system and thankfully through work I have medical insurance... Millions of phonecalls later and after a very stressful period which has partly made me sick (just the frustration of battling against Drs who don't know and don't care...I have been loosing my hair and getting one bad cold after another, which is very strange for me) I managed to get an appointment with Dr Mortimer at the Parkside Hospital, though this won't be until mid-May. Basically, so far nobody from the medical establishment believes I have a lymphatic problem, they keep telling me only people who have cancer have lymphatic issues (?) and yet nobody is willing to offer an explanation for my swollen foot.
While I wait for the appointment, I have made some sort of progress on my own. I am from Spain and travel regularly to see my family. During one of my trips, I went to what we call an "Orthopedic Shop", which is something I don't think exists in the UK in the same way (?). It's like a medical aid shop where you can buy anything from a wheelchair to a prothesis for a missing lymb, any kind of medical gadget... Everyone who Works there is a trained physiotherapist. I had the chance to consult a wonderful expert in compresssion garmets who is completely fully trained nurse-physio. She saw my foot and instantly recognised its lymphedema (again she said she had no doubt at all). She measured me up and gave me under the knee compression stocking and also ordered a made to measure foot glove, as it seems my lymphedema is mainly affecting my toes. Since wearing the stocking, the swelling has massively improved. I should receive the footglove soon, I am sure that will be very helpful. Frankly, I don't know what I would have done without all this help while I wait for an appointment...I'm amazed that just going into a specialised shop and talking to someone who understands this disorder I have received a much better service tan battling with Doctors...
Anyway... as I wait for my appointment with Dr Mortimer, I would like to get prepared in some way to know what to expect? I'd like to have an understanding of what next steps are for someone in my situation as in, assuming he does a diagnostic test that confirms I have lymphedema, what kind of care/treatment is available for someone he has seen as a private patient and who has not had cancer (ie, primary lymphedema). The reason why I'm anxious is that for example my private medical insurance initially said they do not normally cover MLD unless it is after cancer treatment... so I'm wondering what kind of attention primary lymphedema patients are usually entitled to get and how much of it (if any!) can be covered? After my consultation with Dr M, presumably I will be in a situation where I can buy/order compression stockings in the UK?? I'm nervous about this, I don't know how the process works once a patient has obtained a diagnosis... who prescribes the stockings, the GP?
Thanks all again for posting comments and questions on this forum, I have learned so much by just reading.