Advice please

[Torapuck]

I think I could have lymphedema but my doc does want to help, for 10mths they were treating me for varicus vains, sent me to see a vain specialist, went back to my gp sergery saw a different gp who basically told me he doesn't know why they have been treating me for various vains as you clearly can see it isn't , just wondered what you guys think? This is a good day not swollen too bad ( and I keep getting cellutites in it too sick of taking antibiotics )

[naominorthenellis]

Hi, if you go onto the LSN website and find a good MLD therapist in your area, they should be able to help you with a diagnosis - if it isn't lymphoedema then at least you can rule that out. You could also ask to see a different GP in your practice. NNE

[Torapuck in reply to naominorthenellis]

Thank you for your reply, I have changed doctors as I feel they were not interested in helping, I wasn't aware I was able to refer myself as such, I will have a look thank you x

[Lynora]

Is it in both legs? Do your feet swell too? Toes? Was the 'specialist' you saw an actual Vascular Consultant? What sort of treatment did they give you?

[Torapuck]

My foot swells too, not gotten as far as my toes yet, to day my ankle is swollen that much that I can not feel the bone on the inside or out side, it just affects my right leg from the knee down, my mid claf is solid. I have not been back to see the sergon yet my Appoitment is next week, but from what I have found out lymphedema is one of those thing that doctors seem to forget about or miss diagnosed x

[Bluedolffin]

Hi Torawelsh, Sorry to hear that. Go to see a physioterapist, he will be able to tell you if you are suffering from lymphedema or not. GPS are very ignorant on this topic and they are behaving like ostridge. They put their head in the hole and wait until the thunderstorm goes away. You are the thunderstorm for them. Sorry to tell you that.

I went to see a specialist according to her title specialised in vascular and veins yesterday to get a prescription for some MLD massage and she told me that she only diagnoses lymphedema!!!! She says she does not treat it !!!! Imagine how it feels. You need to do some research by yourself as well cause nobody has the clue about this condition and want to know anything( if you are really suffering for LE).

[HelenRC in reply to Bluedolffin]

HI: Manual Lymphatic Drainage is what you need. Don't go for the regular Massage Therapist. The MLD is great and it is definitely directed at the lymph system. First, they open the end passages at both sides of the neck and then continue from special massage all over the body. You see, the lymph system drains at the neck and they must needs open the end before they can get the lymph moving along. It works. I've had many MLD treatments. It feels really good too. Depending on how badly your lymphedema is determines how long the MLM is effective.

[Ginsing]

I can see cellulitis is or has been a problem do keep an eye on that . Try and keep your leg raised whenever you sit/ do your ankle and toes swell much like hot weather, if you fly, go train in a coach that sort of things?

It took about 5 years for a final diagnoses of Lymphodema and it was a Vascular surgeon who knew what it was and got me some help to start me off looking after it.

good luck

xgins

[Ginsing]

Primary Lymphoedema is one of the things it take a while to get diagnosed. There is more help now as a lot of |Physios are trained for lymphodema primarilly it seems to be for secondary following cancer treatrment so imagine my delight when Dumfriess actually had a lymphodema Nurse for 6 months who looked after both primary and secondary. It is often over looked but it can effect your stomach and groin area. So if you feel you are searching for answers there are more appearing every day. We now no longer face the world with missshapen and bloated legs and joins no now we wear Farrow wraps or compression stockings better than Nora Battys any day. I have even just managed a pair of shoes because my feet were so big I could not get any!! Thank you NHS

Keep smiling my friends xgins

[kharimata]

Here in Belgium, you can only get a diagnose and refunding from general healthcare when you have proof of lymfescintography. In this test they inject a dye between the toes and then under a scan they can see the uptake and movement by the lymfsystem from you toes to you groin ... After this test shows lymphatic problems, you get 4 stocking / year / leg and cheeper physiotherapy . I don't know how it works but that is how we do a diagnose here... Good luck!

[kharimata in reply to kharimata]

I forgot to mention that my general doctor believed it was a vein problem for many years, and I had to take diuretics, stockings for vein problems and vein 'healing' tablets. Luckily after 3 years I went to a vein specialist and she proscribed me the test, saying water retention can be also a sign of primary lymphedema. Which was eventually the diagnosis....

[Torapuck]

Thanks guys it seems like I am the same as you lot hope the sergon next week looks at my scan and gives me diagnosis X

[alisonlouise4444]

hi it seems to me that you really to push for a pacific test to get the diagnosis i would insist on it. I

have secondry lympheodema after suffering from cancer so i was diagnosed quite quickly the more

i read up on the subject it seems this isnt always the case!!! Good advice about keeping leg up when

ever you are sitting and make sure the back of your knee is also supported. I also found that having

a cooler bath or shower helps as hot baths make the swelling worse. Ask about compression tights

you can get them on the nhs they really help. Good luck keep us posted x

[clown]

From your photo it looks like you may have a condition I have - lipodermatosclerosis. Lymphedema connected to varicose veins. Doctors thought it was cellulitis. If you do have it your veins may be able to be treated. I was unable to have surgery but doing okay with special socks. Good Luck

[scottymeg]

Hi, I too have primary LE it was 20 years before I got treatment, in March this year I was in hospital for an op, nothing to do with LE. It is a very big hospital in West Midlands yet there was not one single person in the hospital knew about LE. The doctors were bringing trainees to my bed and asking me to show them my legs and explain what LE was.???????????? great. I also have had cellulitis a couple of times.

The advice abt elevation and warm, not hot baths/showers is right. I have had good help this last few years from a special clinic of specialist nurses I do hope you get help soon. Wrapping and stockings does help a lot

Best of luck Torawelsh scotty

[Torapuck]

I was also wondering if anyone else is tired all the time, i have a 2 year old daughter wich doesnt help any x

[lovesradio]

Hi, one of my work colleagues developed leg lymphoedema during her pregnancy but it wasn't properly diagnosed until recently after I took her in a copy of my Lymphline and she got properly referred by her GP to our local hospital physio lymph specialist. Good luck with getting a proper diagnosis one way or the other. Specialists seem to be a bit few and far between. We are all here to listen to each others rants!

[Torapuck]

I went to see a breast sergon today for an unrelated matter and i go the nurses to have a quick look (thought they would have An idea with them dealing with cancer patitants) and they think it could be lymphedema.... So heres hoping vain sergon will pick up on it next week x

[unlucky]

your leg looks exactly like mine and i have lymphodema but also im not getting any help yet either i hope you have better luck than me take care heather x