Do the nhs not do definite diagnosis any more?

[Spine Wars 2023]

Hi,

Really fed up and perturbed. Attended lymphoedema clinic recently and came out with a stage 2 primary diagnosis (or so I thought) got home and written over the records is it's only 'likely'. They didn't take my weight, ask me to strip off to do a full body check, even check what other medication I was on and just seemed to come to it's late stage 2 by way of skin check. Just felt giggled at and no real understanding I'd like my life back. To wear normal shoes, go in a swimming pool, not have to have district nurse visit etc.
Got to the point I just want to wear these wraps which will hopefully do more then the compression?!

I had similar experience earlier in the year; no one could tell me if I'd had severe cellulitis or necrotising fasciitis. I appreciate I was emergency operated on by an Orthopedic surgeon as opposed to anyone with a specialism in skin conditions, it was suspected by a GP later the lymph fluid was forcing its way out where they'd left suspected lymphoedema/oedema a long time so a surgeon removed a little flesh and fluid blisters which went for testing but didn't come back with any results apparently. The surgeon themselves were only like 50:50 with a diagnosis of lymphoedema, they wanted firmly to say my (remission) diabetes played a key part and that I'm not clear of nf coming back : (

I'm really concerned how this works with the likes of making a pip claim and dealing with future medics with all this up in the air medical conditions. I've had people say awful things like it is good you've put diabetes into remission, least you won't get the complications but how can it be uncomplicated to end up with these infections effecting the lower limbs.

Looking up cellulitis, nf, and lymphoedema, they all state can contribute to a psychological impact, so I'm pretty sad I I've found myself having to pay for anti depressant treatment.

Should I fight to see Vascular? the clinic did write in the report to the GP they might like to consider this. Sorry for the rant I just wasn't prepared to see the word likely.

 

[Rokaab]

The NHS do do definite diagnoses
But, was it an HbA1c check they did or just a finger prick check - if it was a finger prick then they (the HNS) cannot diagnose from that anyway, needs to come from an HbA1c (normally 2 fairly close together I think, 2nd one for confirmation)

If it was an HbA1c they may need someone else to verify it as the lymphodema clinic may just not be able to diagnose that officially cos its not what they do - ie, yes you probably want to get your GP to do the blood tests

[Edited a typo]

 

[Spine Wars 2023]

Ah thank you, no nothing to do with the HbA1c sorry for any confusion.
In my other comorbidities there is no likely about it under active thyroid, a gynae problem, except the remission for diabetes can come and go. Wonder if it is treated like menopause, they won't test bloods under a certain age so that must only be listed as likely.

The surgeon from April did leave an open appointment for 6 months but I see his point, they are there for more mechanical Orthopedic matters.

I just don't know if I like the idea of something noted as likely.

 

[Rokaab]

I just don't know if I like the idea of something noted as likely.

Go to your doctors then, the hospital departments not associated with diabetes would be very unlikely to diagnose you with diabetes anyways as that is not what they do, they diagnose and do stuff for their own specialities not others

Your GP can do the proper test and then a confirmation test if they feel it necessary

 

[Spine Wars 2023]

Again this isn't about my diabetes. Hence my posting in other conditions sub section.

I have already been though the GP to get to a lymphoedema clinic after so many weeks waiting understandable, who I would have thought could provide a thorough diagnosis. Not leave it so wholly wishy washy as its only likely.

The GP really rather gets to do very little when you are meant to be house bound under district nurse care.

I don't know, I've posted on a support group for the condition as well do you have to live with lymphoedema a certain period of time (?) before it makes it to the medical info part on someone's record.

Sorry to have clearly bothered you Rokaab.

 

[Lakeslover]

Hi,

Im sorry to hear what you have been going through, and can understand how stressful it is when no one seems to be able to tell you exactly what is happening.

I have lymphoedema in my arm after having lymph nodes removed so different from your situation.

When I was referred to a clinic they measured both arms and confirmed the diagnosis as one arm is significantly bigger than the other. I’ve tried lymphoedema massage by a qualified practitioner, a machine the clinic have which is supposed to improve drainage basically by putting pressure on from finger to top of arm, and a compression sleeve. Nothing made much difference.

I believe it is possible to also confirm the diagnosis by scanning, but I don’t know how easy that is to access.

I have to be very careful with any insect bites or scratches as it is easy to develop cellulitis. I have had cellulitis with no apparent reason, I suspect a scratch or bite too small to be seen.

 

[Spine Wars 2023]

Thank you, I'm really sorry for your plight.

Mine I think it battling obesity long term, the continual losing weight and putting it on, I do agree with the district nurse.

I would dearly love to get liposuction privately but the scarring is probably to bad and necrotic now. When I got to the clinic I was just given wraps and told that'll sort it but I've been in compression since July with no improvement but I did get to a slimming group last night and a person turned up with legs I'd say are akin to lipoedema, just completely exposed with no support so maybe it is something not really taken seriously in the area in which I live and I should be grateful I got wraps.

I had a post surgery mri scan which confirmed oedema, believed consistent with having cellulitis.

I've just come to the conclusion the doctors really don't know enough about lymphoedema and feels this is a condition treated along the lines of ibs and fibromyalgia. We'll just put this maybe label on it.