LSN
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Hi all just popped in to day Hello.

Hi all ,i just popped in to say Hello, read some posts and give an update on the changes I've had since i last posted.Well first of all i haven't been in for a while,and would like to wish everybody a very happy new year,a bit late but better late than never.

Well here we are another year,and the lympheodema still with us but for me i has got worse,but still coping with it ,and dealing with it every day moving on.2017 i had my last appointment with the lymph nurse,and am now getting my compression garments from my gp on percription.

This has been a big change for me,because i no longer get measured for compression stockings,i just got to have the same ones every time ,as i don't think the nurses at the clinic or the gp know how,or do measuring of limbs with lympheodema.I dont have dopplar tests anymore ,so don't know if there are any blockages or anything,so thats gone down the pan as well.The nurses at the clinic were fantastic and i was told that from now on there is no more lymph clinic and patients will be referred back to their GP'sthe very people who sent me there in the first place.

Well the lympheodema has got worse,left leg is badly swollen and it has spread to my groin and stomack ,luckily im retired and spend much of my time indoors,which i don't mind as i get good help from my wife who has been fantastic,but i like to do as much as i can myself and not be a burden on anybody,at least thats the way i feel.

I am not complaining,there are people and children who have worse conditions than mine,and it's those i feel sorry for,my heart goes out to them,i have what i got and im dealing with it and move forward,and take every day as it comes,thats the way i look at it,

Well sorry if i bored you all with my short story,just hang in there,life goes on with or without lympheodema,there will be bad days but the good days out number the bad ones.I wish everybody all the very best,take care ,and keep posting,ill be back soon,bye for now.

Larry.

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Weren't you under the care of Mount Vernon??? What's happened to them???

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I was told they are not treating lympheodema patients anymore,and referred back to my Gp.Gp's don't know anything about lympheodema but my nurse passed on my stockings measurements and thst was it,i wouldn't mint but they were fantastic at Mount Vernoni do miss them.

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I’m in your neck of the woods but luckily I’m under St. George’s. But I do see privately a Lady for MLD. She did measure me for some farrow wraps and wrote to my gp to prescribe them which he did. Would there be any value or possibility you could see someone privately even for measuring?

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Sorry just realised mount vernon not in my area! Had it muddled up. But I wonder if the same would apply. Worth seeing someone privately who could advise the gp on what to prescribe.

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Thanks for your reply Jenny,i rang the hospital yesterday,but was told i need a referral from my GP,so i have an appointment with Gp on Feb 2nd and see how i go from there.

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I do think that as your lymphoedema has got worse you should be referred back to a lymphoedema clinic. Have you tried the Lymphoedema Support Network (LSN) lymphoedema.org? As well as a website they have a telephone helpline. That aside I think there is still a lymphoedema clinic at Mt Vernon, my mother-in-law has been seen there recently. Discharge ftom a clinic should be because your lymphoedema is stable. Yours isn't, maybe see what advice the LSN has. Best wishes.

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Thanks Anne,i rang the hospital but can't go back without a referral from GP,so i booked an appointment for 2nd Feband ill see where it goes from there,thanks Anne .

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Hi Anne, been to see GP this morning and he is referring me back to Mount Vernon, I'll have to wait for an appointment after they receive notification from GP, so onwards and upwards again , lol. Hope all is well with you , thank you for your replies and you kindness, much appreciated.Thanks Anne.

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Excellent, keep us updated

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I'll make a few phone calls Anne and see if I can get back to Mount Vermon , and lymphedema. Org.Thanks Anne , I'll let you know how I got on.

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Hi Larry...I have just joined this forum. I have recently joined the lymphoedema clinic held in the hospice centre in Harlington. They were happy to accept me but I had to be referred by my doctor in Ickenham. Like you I have the problem in both legs but in the knee and above area. I am presently having treatment massages every week. Their phone number is 02087590453 do hope this will help you. Sincerely Vicki

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Hi Vicki,

Thank you so much for your post,and the number of the massage therapist,and welcome to the forum.I have taken down the number in my address book,and as i am waiting to see if i get recalled to the clinic ,as i have just been back to the GP and he has written for an appointment ,so with any luck i should get mla should i get an appointment soon,if not i will give my GP the number you have given me and ask to be referred there.Thanks again Vicki for your post,very much appreciated.

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Hi

Must be frightening to be getting worse and not feel supported.

Having moved from one part of the country to another, I gave the GP for my medical records hard copies of all the leaflets my Wonder Nurse gave me and I ask for Doppler tests and for new prescriptions of hose every 6 months (which is how I was getting them before). If I saw any difference I would be at the GP as an emergency appointment like a shot.

And GPs don't like doing it but when I go abroad I ask for a prescription so I can take antibiotics with me in case I start with cellulitis (which I realise I have had a few times on holiday....I thought I was allergic to volcanic dust as I got it first walking round Pompeii and Vesuvius!!)

Yes, reading these posts there are people who are a lot worse....but without proper treatment and support, I don't want to be one of those who gets worse.

I don't know your history, but wonder if you were taught exercises and simple lymphatic drainage? It really made a difference to me, and I can tell if I miss doing it, especially when it gets warmer.

Trust you get the help you need.

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Hi thank you for your reply very much appreciated.I was seeing a very good lymphedema nurse at the clinic ,and because there was no changes she referred me back to the gp.My gp surgery are very good but they don't know much about lymphedema.I was getting my garments every six months from the gp but no measurements and my legs were swelling more,and no dopplar tests either,so basically i had nobody to turn to.I went back to the gp and asked to be referred back to the clinic so he has done a memo and sent a letter ,now i will just have to wait and see what the outcome will be.I know how you must feel about the cellulitis,i did get it once,but always kept legs well moistened and tried to get no scratches or infections on my legs and so far i have been lucky ,i have managed to avoid it returning.There are people on here who are a lot worse,and are getting little or no treatment which i feel so sorry for them,and wish i could be mire help to them but not every district has a clinic near hand,so i consider myself very lucky and between the gp and the clinic they were fantastic,but i feel if they refer you back to the gp after the clinic ,then you are on your own,apart from getting garments every six months which i am totally greatful for.Thanks again for your reply .

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