How long a diagnosis took!!

[SetFreeAtLast]

Hi

Just thought I would share my experience. I first suffered from swollen ankles and legs when at university, aged 19. I was referred to a top teaching hospital. My kidney function was tested. I was told there were no problems.

Each year, especially summer, it got worse. When pregnant, in the long hot summer of 1976 I was in constant agony. Year after year I suffered the intense pain of feeling as if my shins were about to explode. Long meals with friends left me with legs like tree trunks. Holidays in hot countries were awful and I now know I developed cellulitis (thought I was allergic to volcanic dust as we had visited Pompeii and Vesuvius!!).

Year after year I would ask GPs what was wrong, only to be told I had 'painless oedema of the ankles'!! As a teacher, on my feet all day, I was often in agony. Eventually, I tried in desperation and saw a GP I had never seen before and poured out my wows. He actually named what he thought I had, Milroy's Disease aka Primary Lympoedema and he referred me to the specialist lymphoedema nurse at the local hospice.

She was amazing: she understood!! She took a genogram and I realised that it would appear I had inherited the faulty genes from my maternal and paternal families. When she asked me (because my right leg is always worse than my left) "I bet on photos you look as if you only have one leg as you hide the right behind the left" I burst into tears.

Over a few consultations and checking progress by measuring my legs, ankles to groin, to the nearest mm, every 2 cm each time, she taught me exercises and simple lymphatic drainage, and prescribed compression hose.

I had had to wait nearly 50 years for my diagnosis. My wonderful GP explained that the field of medicine is so vast that no one GP can know everything. Thank goodness he did.

I am now pain free (mostly!). I wear my hose religiously; likewise do my exercises. I wear long skirts and trousers. On holidays I occasionally go without the compression hose for a day to walk on the beach. I patiently explain to each new practice nurse what they are supposed to do when I need re-measuring every 6 months for my new prescription. I have to argue with new GPs to give me a prescription of antibiotics to take abroad in case I develop the first signs of cellulitis. I have done my own research on the internet. I know that they are exploring the genes responsible for my condition.

I do all I can to spread the news, I have even spoken to ladies in town and advised them what to say to their GP to get a diagnosis.

I will live my life as free as possible!!

[Lynora]

You are an inspiration!

Have you joined the LSN? They would probably like to publish your story (sadly, not isolated) in their newsletter.

Your GP deserves praise too.

[veriterc in reply to Lynora]

Lynora

You poor thing - but sadly your story isn't rare. I just wonder why on earth we put up with such appalling care; OK - GPs can't be expected to know everything, but there is the Internet and every GP seems to spend more time staring at their screen than us - so why aren't they using its fantastic power? If we can go on the Internet and find information, why can't GPs? When you next go abroad, why don't you take advantage of their often better medical care, and get your Hotel Concierge, Rep., or Tourist Office to book you into the best lymphoedema clinic for an examination? The way to treat my lymphoedema was told to me by a Hungarian specialist, when 5 hospitals in London had given me wrong care.

[Lynora in reply to veriterc]

Not my story Verite - SetFreeAtLast was the original poster. (Sadly her story isn’t isolated and many health professionals still do not recognise it, nor are they willing to refer patients on to centres who could help!)

[AnneBury]

When I was 12, I was admitted to hospital for "observation" as I had developed a swollen ankle, foot and leg (below knee). I was in hospital for a month while tests were done to see what might be wrong with me. I went home at May half term because we were going on holiday, serious things like heart and kidney had been ruled out and I seemed fine. Towards the end of the summer holidays some medic had the idea that putting my leg in plaster for 6 weeks might help. It didn't so then everyone more or less gave up. Then my brother got a swollen leg and when I was 30 my other leg swelled up. Not sure when a "lymphoedema" diagnosis actually came but I came across Peter Mortimer completely by chance not long after second leg swelled up. (I met a colleague of his through work, she looked at my legs, asked me a few questions and said "I have a colleague who would be very interested to see you", he was fairly on in his career then & is my hero!

[veriterc in reply to AnneBury]

Isn't it incredible (but frightening) that we meet up completely by chance with the medic who actually can understand our problem and sort it out. But Oh! How we have to bite our tongues when we know there is something wrong, and everyone we meet tries to tell us there's nothing to worry about.