Doctors are saying I don't have lymphoedeama?

I have been battling back and forth with doctors trying to get a diagnosis, there is strong evidence of something like lymphoedema on my mums side, tragically she died of septaceamia last year and I am still coming to terms with it. I saw a vascular surgeon last year and have been diagnosed with Chronic venous insufficiency, my mum had this so did her siblings. I have been prescribed support stockings (knee length) as well as Furosomide (water tablets). Along with this I saw a diabetes specialist after a synacthen test I was found to have low testerone. I have had numerouse tests for diabetes, sleep studies etc all normal. Some time ago I had a ultrosound scan on my liver and it was discovered I had a enlarged fatty liver (I don't drink and I do not consume very little convenience foods and absolutely no ready meals). I have a fused vertabrae of the lower back and try to be as active as I can, unfortunately my size, health and lack of clothes impedes a lot of what I can do. My symptoms worsen in the afternoon, my knees hurt(I had knock knees as a child), I get kidney pains also in the afternoon, I find it difficult standing, let alone walking( I use a stick). I am currently wearing 5xl gym pants as I find them very comfortable and not heavy on my legs. I don't know whether badgering the doctors more because I am desperate to reduce my size and all they go on about is weight,which drives me mad. I am going to see my doctor again today as I am not happy with things and want to try and improve my health but need their help also, I am contemplating accupuncture or possible liposuction if they think it's all fat.

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  • Hi

    After knee replacement surgery in 2010 I was eventually diagnosed as having leg lymphoedema (but it has also been described as venous insufficiency by the local tissue viability clinic). I had ultrasound,Xray, and MRI scans done of the leg by Orthopedic to try & identify what I had before I was transferred to Vascular department who identified the problem immediately. They then had to follow protocol ( I had to have formally recorded ultrascans of groin and leg blood flows then Doppler Scans ; before then being referred to Lymphoedema Clinic where one look and several measurements later I was discharged to GP care on proviso of 6-monthly Dopplers and 6-monthly presciption for compression hosiery. Subsequently increased to level 2- a trial at level 3 was just too much! One thing I have found out is that Furosomide and lymphoedema do not agree with each other- when prescribed it by a GP it sent my blood sugars out of control within a couple of days and seemed to make the fluid retention worse.

  • Hi Bemmyboy - you can certainly develop lymphoedema as a result of chronic venous insufficiency - the LSN do a leaflet on it - give us a call on 0207 351 4480 and we will be gla

    d to send you out a copy.

  • Great questions. Oedema is the medical term for excess fluid in the tissues. This is caused by many different reasons. The formation of this fluid by the small vessels called capillaries and it's eventual return to the blood stream is in a very fine balance. It is estimated that we make about 20 litres of this fluid in our body each day which is normally all returned to the blood. You can imaging that if you make more fluid e.g. venous insufficiency or something simple as twisting your ankle. The other problem is not returning it to the blood e.g. lymphoedema then swelling occurs. Some people have multiple reasons for swelling. Lymphoedema can be easily diagnosed using ICG lymphography or lymphoscintigraphy. We have had several patient who had been told they had lymphoedema but following a scan this diagnosis proved not to be correct. This is normally distressing for the patients who feel let down have sometimes undergone many years of inappropriate treatment.

    A Ramsden

  • Very sorry to hear of your distress!

    Very important that you address the weight issue!

    You may also have a low grade kidney infection. Why else would you have kidney pains? I live in CT and am of British ancestry. Here we have cranberries! they are excellent at preventing kidney infections!! I suggest you buy several 2 liter bottles of Cranberry juice. Drink several glasses a day until the kidney pain goes away. Should check with you doctor if you are taking prescriptions for various things. Thereafter, just one a day! Be sure to drink plenty of liquids!

    "Chronic venous insufficiency, my mum had this so did her siblings. " In my opinion this what they call 'lymphadema'. The term is correct, your drainage is insufficient, but it is incorrect in that the Lymph system is insufficient, not the venous system. Since your mother had it and you have it , it's probably an inherited condition that requires proper care more than a 'solve all' treatment. The Lymph system requires exercise to work properly, so the more you can get into your day the better. See if you can get an exercise plan going! All exercise will help!Good Wishes, Xylyne!

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