Another Newbie

I haveI have had a problem with my legs for the last 30 months with diagnosis that its part of having diabetic 2

I spent much of that time with babies nappies wrapped around my left leg When I say my legs leaked fluid. Most people have no idea the amount they leaked 3-4 ultra toddler nappies that would weigh very heavy when removed the nurses had nothing I could wear out. but the nappies were the only way I could leave the house.

I was told it was cellulitis. My Children bought me a circulation buster for Christmas but the book said not to use if you have cellulitis no one will tell me if using it might be good for me or bad so it sits in the box.

Then i was told I had lymphedema but with no advice on how to treat it. I contacted the tissue viability nurse my self and she told me I needed to be referred so i got my diabetic nurse to refer me. The tissue nurse had some experience with lymphedema and ordered me a stocking but I had a problem with the fitting. now the tissue nurse has finally sent me to the lymphedema clinic. so after nearly 3 years of countless jars of creams and steroids and antibiotic to clear 20-30 infections i hope i am now going to be seen by people who know what they are doing. But why oh why has it take so long to get this far when any infection could have very easy lost me my legs. SO watch this space for the next instalment. DO I feel confident it will finally get better. I wish I did but I dont.

9 Replies

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  • Hi Andor,

    It is truly shocking to read about what you have endured is still happening in this day and age. Many of us have arrived by different routes, but at the end of the day we are all stuck with this incurable condition called Lymphodema.

    I certainly hope you will now be getting some decent treatment to keep the condition under control. You have survived and hope to hear some more encouraging updates on how you progress.

    Please tell us your age and location too. Stay strong and resolute!

    Cheers

    Christo

  • Hi Andor..

    I have been there done that with the lymphoedema...except it took me 10 years to get diagnosed...and boy do I understand about using them nappies and how heavy they felt when removed...like you they were the only solution...I got ulcers as well,,, BUT I was finally diagnosed in October 2012 after enduring this since at least 2003...But now I am well on the road to self-management of the Lymphoedema ..I have reviews every 3 -4 months...

    I too have Circulation Booster thinking it might help that was before I was diagnosed..and I have since asked my Lyphoedema Therapist about using it and she said no.. it is not a good idea at this stage...

  • Morning Andor

    Glad you found this site it is so helpful. I understand what you mean about the nappies it is hell but astonishing that so much fluid exits by just draining through a tiny hole. Do take care hopefully you have found the right help now and management of your lymphodeama will improve your life - it is certainly helping me :) gins

  • hi andor

    it's completely understandable that what started as frustration has turned into anger, & it's disgusting that it's taken so long for you to get the right diagnosis & the right team

    you'll see you're not alone, but that doesn't make it any better does it?

    you're here now though - welcome - & there's loads of info that might be useful one the site

    & yes, tell us how you get on

  • Hi Andor welcome to the site and so glad you found us. There is still so little understanding of lymphoedema and cellulitis out there in the general healthcare system. its crazy. Glad that you have finally got referral to proper clinic, hope you get proper support.

  • Hi there andor! I went through the same thing as you. First started with my GP giving me water tablets but of course they don't work on lymph. Endocrinologist told me I had lymph, told my GP and was immediately referred to lymph clinic. I too have used incontinence pads wrapped around my legs to collect the fluid and I've had a few bouts of cellulitis, one I had to be hospitalised for. It isn't curable, but it is manageable, thank goodness. I have terrible problems getting my stockings on and off, but they do help. I hope you're now getting the help and treatment you so rightly deserve. Take care XXX

  • Hi Andor 32

    My experience also. I had my prostate gland removed in December 2012 after four years of procrastination by the NHS. Then in January I found my left leg swelling slightly. Nothong to worry about said the GP and surgeon. Then I was sent to DVT clinics and spent a day per week in a very uncomfortable day room waiting for an ultasound and the results of a blood tea. The evening before the third DVT clinic I noticed my abdomen was swelling more than due to the surgery in December. Nurses and juinior doctors could not detect any swelling and said my abdomen was as for the typical male. Both were female and I hate to think what their typical male escorts are like. The consultant who advised the ultrasound was ok but the blood test was also female and said you can retiurn tomorrow so we can remeasure your abdomen after 24 hours. The next morning surprise surpriase my abdomen had expanded considerably. So I was admitted to hospiatal for a week, had a CT scan and was told the problem was fluid under my bladder where the prostate gland had been removed but that would resolve and i was discharged.

    Then my left leg began to swell again and again GPs and the surgeon said there was no problem it was definitely not lymphoma and would resolve soon and what I needed was exercised.

    The problems with my lefty leg continued and a GP prescribed compression stockings but again refused to accept lymphoma as did the surgeon even though the lymph gland on the left side of my prostate gland had been removed.

    But then I had the same problem convincing the GPs and Urologists that there was problem with my prostate gland between July 2008 and December 2012. Though my PSA levels had been high and even when a biopsy indicated malignant cells in the right side of my prostate gland the McMillan Nurse who let me know I had early stage prostate cancer advised NHS policy was 'watch full waiting'. But as in my opinion I had been on watchful waiting or procrastination since July 2008, I insisted upon surgical removal of my prostate gland as soon as possible within the cancer waiting time limits. Then to my surprise the McMillan nurse informed me I would have to be assessed as having 10 years life expectancy and an MRI scan and Nuclear bone scan to prove the cancer supposedly locked within my prostate gland, hence the recommendation of watch fulL waiting had not spread to other tissue or my skeletal structure.

    Following the MRI scan a Oncologist informed me the 18 needle biopsies had failed to find the malignant cells spread throughout my prostate gland and not just a few malignant cells in the right side of my prostate gland. the Oncologist also explained that the symptoms I had complained ab

  • OOPS POSTED TOO SOON/

    The oncologist explained the symptoms I had complained about since 2008 was undiagnosed prostatitis.

    Then the surgeon who had thought my relatively small prostate gland would be easily removed with full nerve sparing found the left side of my prostate gland was in very poor mushy condition, hence the removal of the left nerve bundle and LYMPH GLAND. Perhaps causing the swelling in my left leg?

    But then I have become used to procrastination by the NHS. In 2008 while on a week long hill walking and climbing holiday I found it increasingly difficult to sleep at night from the third night on. I suffered electric shock sensations down the left side of my body from breast to knee. I had also experienced a sudden instantaneous pain somwhere in my lower body. I suggested to GPs that there was a problem with my spine and or my prostate gland but they diagnosed lower back pain or sciatica. I struggled to have my problems taken seriously and was told its all in your head and PCT and NHS policy does not allow any form of imaging for lower back pain. I found the American Spinal Cord Tumour Association who referred me to Prof Jallo MD in John Hopkins Hospital Baltimore. Their diagnosis based on the symptoms I have to the GPs was a spinal cord tumour. I persauded a GP to refer me to a neurosurgeon but the neurosurgeon downgraded the urgent referral to routine and did not see me until after I obtained an MRI scan which showed the tumour as suggested by the SCTA and Prof. Jallo MD.

    So now it is a swollen leg, I have been prescribed compression stockings, the problem is not improving and I will again attempt to persaude a GP to refer me to a lymphodema specialist. One GP has already informed me there is no pitting when the skin of my leg is pressed. But from what I have gleaned by the time pitting of the skin occurs serious damage which could have been prevented has occurred. But then I am not a doctor or nurse just the patient with the problem.

    abprops

  • Normally i would say its nice not to feel alone in this, but I wish I was alone in this. I wish that there were not so many of us being miss diagnosed or just finding it so hard to be seen by the right people..

    Thank goodness for the people who are there to help but it would be better for all if it all came a bit sooner The tissue nurse was a great relief to find some one who understood and passing me to what I hope is the right people.

    & Yet again i say if they can put a man on the moon surely there must be something better than a nappy wrapped around my leg if I need to go out.

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