Ola222 months ago

hi Stefan

Sorry you are having this nightmare whilst awaiting some form if diagnosis. I think we have all been there at some stage although you sound like you have very uncomfortable symptoms which have taken over. Hang in there and if so uncomfortable there is pain relief you should be able to access whilst awaiting the outcome of the tests you have undergone.

LymphSuppNetworkPartner2 months ago

Hi, fingers crossed either the bloods get you some answers or at least put your mind at rest in terms of kidney/liver issues. Sometimes the cause of swelling is never identified but once they have ruled out things they can then get on with treating it which will hopefully alleviate some of your symptoms

Perido2 months ago

Hi Stefan09

It's very frustrating when GPs don't seem to be taking our symptoms and concerns seriously. If the tests don't result in a diagnosis, I suggest you insist on a referral to a specialist.

There can be many reasons for pain and swelling. If you are diagnosed with lymphoedema there's lots of us here with the condition who can offer advice and support.

Best not to Google to try and self diagnose. It's very often not helpful and just increases anxiety.

Let us know how you get on.

DeadfootMo2 months ago

Hello Stefan09,

Try not to panic. I know this is easier said then done.

Firstly, I hope you are waiting for an actual diagnosis of everything from a qualified medical lymphedema specialist and a hospital specialist as the one thing people don't need to be doing and getting knowledge from is the web.

Secondly, you will get support here from sufferers and professional advice, but you will have to get it from your own GP, a hospital specialist or a specialist clinic dealing with lymphedema and other swelling issues.

Thirdly, some of these clinics are run from the likes of a hospice, so don't be alarmed if you get an invite to an appointment from one of these.

And finally, we all hope these medical problems of yours don't lead to you be sidelined for too long, as I am sure that the reason this is happening is due to the NHS trying to catch up on so many patients who lost out during the covid years.

Keep smiling if you can.

yorkiebee21 month ago

My excellent lymphoedema clinic has told me on my last couple of visits that before too long they will be handing me over to my GP for further treatment/management. This prospect fills me with dread as my GP practice just doesn't seem as "on the ball" about this condition as they might be. Sorry I have nothing practical/helpful to add to your personal circumstances but I just wanted to share my concerns about it.

Perido in reply to yorkiebee230 days ago

Hi yorkiebee2

I would also dread my GP practice managing my lymphoedema. From what I've already experienced the GP practice nurses can do little more than measure for 'off the shelf' garments, which is of no use to me.

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yorkiebee228 days ago

I have a feeling that will be all the treatment/management I get when I'm "handed back" to my GP. Worrying and depressing.