Whole lymph system problem?

[Boudica78]

Hi,

I'm Victoria 42 and I've just been diagnosed with lymphoedema in both legs, with likely lipoedema in both thighs. I'm wondering if there's a bigger problem with my lymph system though.

I had huge tonsils until my twenties - always getting tonsillitis. I was diagnosed with ME when I was thirteen - my main problem heavy, achy - painful legs plus exhaustion. My Mum took me to the GP when I was 15 because she was concerned about my legs and that they had become very stocky - that was put down to weight gain. I then had gut problems from when I was 21. Diagnosed as lymphatic colitis at 34 following a diagnosis of Turner Syndrome. Oh and I was offered compression garments for my arms too - they're often heavy and achy.

What's the best way of getting this all investigated please?

Many thanks

[Lynora]

If you are in the UK contact Lipoedema.co.uk - they can assist with finding suitable help. Who diagnosed lymphoedema?

Did you keep your tonsils?

[Boudica78 in reply to Lynora]

Thank you. Will do. GP diagnosed me and I've also had my first appointment with the lymph nurse.

[lovesradio in reply to Boudica78]

Delighted that you have had an appointment with a lymph nurse, hopefully the start of proper diagnosis and treatment, it's a shame it can take half of your life to get to this point, but onwards and upwards from here!!

[Boudica78 in reply to lovesradio]

Thank you! Am frustrated the TS clinic didn't pick it up, when it's common with TS, But like you say, onwards and Upwards.

[Boudica78 in reply to Lynora]

I did keep my tonsils - just! They shrunk a lot when I went (almost) dairy free.