How do I go about getting any treatment as not been offered anything?

[pinkieboo]

I was officially diagnosed with primary lymphoedema two or three years ago although I knew I had it as it is hereditary. It is in both legs and feet but worse on left. I have been offered no treatment at all, I did pay for MLD for some time but it got too expensive! Where do I go from here? I am a teacher and on my feet an awful lot and my legs are suffering for it!

[jinger]

Have a look on the link below for your local lymphoedema clinic. Print it off and take it to your GP and insist on a referral. You will need to check on the list that the clinic you have in mind treats primary lymphoedema as not all do as some are cancer patient clinics only (treating secondary lymphoedema only).

thebls.com/directory/index....

This is what I had to do when my GP sort-of diagnosed me with lymphoedema - he had no clue where to refer me or how to treat me so I did some digging on the internet and found the above directory. I now attend a clinic in Skegness - great excuse to go for a bag of chips, stick of rock and a walk along the sea front after I attend the clinic!

[pinkieboo in reply to jinger]

Thank you, I'll give it a go!!!

[rother]

I too have primary in both legs, more so in the left.

It's hard when you don't get help, if you can I'd try and stick to the MLD as the clinics are looking mainly at secondary.

Do you wear your compression garments.

Swimming is brilliant for primary along with walking

Don't let it get you down, I know how you feel i just wear the compression garments and just attended the 6 monthly checks without MLD and now its getting much worse and I have to start going for MLD regularly, I too am going to struggle money wise but the NHS won't do anything else

[norberte]

hi pinkieboo

sorry to hear you've been left high & dry - it's disgusting, isn't it, & probably only going to get worse as things go on

my local service has already shrunk - more rationing & stopped doing some things all together

excellent idea from jinger - thanks jinger, useful for a few of the rest of us as well

& have you had a basic fitting for stockings & been given new ones fairly recently? without stockings the mld couldn't be as effective, & they'll make a massive difference if you're on your feet all day

have you asked the person you used to go to for mld whether they know where the nearest nhs clinic is? most of them would know - a lot of their clients would be going there!

good luck finding something, & let us know what happens when you plonk the info in front of your gp - i guess if you manage to find the info now, they could possibly have found it 2 or 3 years ago with a bit of goodwill

[pinkieboo in reply to norberte]

Thanks folks for all of your replies, and no, I haven't even been offered compression garments!! I'll be making an appointment with my GP next week!

[lovesradio]

Hi pinkieboo, aaagh it's depressing how many GPs don't have a clue. LSN has list of support groups round the UK qnd lots of good tips as well. good luck with getting seen properly by lymphoedema clinic

[suzie_danger_girl]

I can only back up your experiences tbh and rother is wise, I go to a clinic occasionally and I'm basically telling THEM things as they onky know about secondary its a bit of a waste of time.

One bit of advice, try to get them to measure you (or I've got to the point I measure myself!) For tights or stockings on the nhs drugs tarrif. I can just do a repeat prescription every timr thry get a bit baggy. If they just give them to you at the hospital you can't get a new pair until you see them, my lot have been known to keep cancelling my appointment for a year and a half.

I use Haddenham veni they are super they look like normal tights and as I say repeat prescription is your friend. Get some as soon as you can. I don't know how I got by without mine and theyve changed my life in the past 5 years those and light weights and swimming have taken me from near disabled to now having normal looking calves for the first time in my life. Good luck

[pinkieboo]

UPDATE - finally received two pairs of compression knee high stockings after being measured for them before I went away on holiday - I have been wearing them every day for just over a week now and can already see a massive difference! The swelling in my feet, particularly just below the toes, has almost disappeared, and my right foot (which was the lesser affected) looks like a normal foot! Did enquire about a NHS referral for MLD as well but have not heard anything about it yet so I am going to chase it up today. Thanks for all your help and advice and as much as I would love to wear my flip flops for the last few days of summer, I am going to persevere with these stockings!!!

[Mon1caM]

I suggest you find the nearest specialist lymphoedema clinic (not cancer related). I got nowhere until I contacted the Lymphoedema Support Network and asked them for advice - for me the nearest was the clinic under Prof. Mortimer at St George's Hospital in Tooting Bec, London. It took me about two hours to get there, but it Was worth it, with proper examination and advice to me and my GP (who had asked me to do some research! ) about managing primary lymphoedema. You do need a Consultant referral, but your GP should help, or you could see the Prof or his co-consultant, dr Kristiana Gordon at Parkside Hospital, Wimbledon, privately for your first appointment, then ask to be moved into the NHS clinic as I did. There are not many clinics that specialise in this subject - most are cancer related. All the best!

[Hidden]

i can't believe you were offered no therapy go to national organization for lymphedema and they can direct you to all types of therapies in your location . good luck