Whole lymph system problem?: Hi, I'm Victoria 42 and I... - LSN


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Whole lymph system problem?



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 :)

5 Replies

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.

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