Primary lymphoedema - early stage?: Hi everyone! I am... - LSN

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Primary lymphoedema - early stage?

Doro9
Doro9
8 Replies

Hi everyone! I am new to the community and to lymphoedema (haven't been diagnosed yet).

Basically, my left leg and foot swelled all of a sudden about six months ago. It was normal before dinner and it looked like a sausage after. Since then, I've had pretty much every test to rule other conditions, as I experienced swollen lymph nodes in neck, groin and collar bone. A vascular surgeon has now suggested that it could be primary lymphoedema, and my GP has referred me to a clinic.

I have read some information and some things do not seem to add up. For instance, my foot came back to normal after three days, and most of the swelling is now on my thigh area (the other thigh has started to swell too, although it might be lack of exercising). The swelling doesn't vary - I measure my leg frequently and the swelling has stayed at 43 cms day and night. At the moment, I am able to "pinch" the base of my second toe and there seems to be no "pitting", although my thighs are red and warm, and I have been taking antibiotics for a few days.

Did anyone start with similar symptoms? I know that every case is different, but I would love to hear from others' experience :-)

8 Replies
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AMcL

Hi Doro9

I’m new to LSN too.

Your experience sounds completely different to mine, sorry.

My Lymphoedema has been since birth basically and swelled ‘slowly’ until it was noticeable in my teens.

I hope you aren’t in any discomfort.

I have no pain, redness or anything like that. Just a pretty big leg compared to my left - and it’s unsightly - lot of variscosity particularly around the hamstring.

My calf is pretty big too.

However my legs are also quite muscular so that may go some way to helping the problem.

I’ve never had any pitting either.

All of the above has contributed to me being quite unwise - I stopped wearing my support stocking years ago and haven’t done much manual drainage.

I’m lucky I can get trousers to fit me and because I seem to be ‘getting away with it’ I haven’t done much prevention.

However I hope to return to the clinic this year.

I hope yours calms down and the redness & heat subsides and that you get a clear diagnosis soon.

Oh, and I never wear shorts.

AMcL

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Doro9
Doro9
in reply to AMcL

Hi AMcl!

Thanks so much for your reply.

I am really sorry that you've had to cope with lymphoedema for such a long time. However, it is a relief to know that your are not in any discomfort or pain; my infection has subsided thanks to antibiotics, so I feel a lot better!

I am happy to read that you are planning to go back to the clinic soon. I am quite new to this but most people on this blog seem to suggest that compression stockings are a must to reduce volume.

At the moment, I am trying to 'renew' my wardrobe, as I have always worn skinny jeans almost everyday. I am Spanish, so I'm really dreading to visit my family there in the summer :-/

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DeborahS32

Hi Doro

My experience was similar to yours in some ways. It's great that you've been referred to a specialist lymphoedema clinic - my journey to get to the right treatment was much longer!

I was on a long walk (consecutive days walking 10+ miles a day) and part way through the third day my lower right leg and foot became red and uncomfortable and swelled a lot. I checked carefully and there was no sign of any tick, bite or sting, basically nothing to explain it.

To cut a long story short, my GP sent me of to check for DVT - no problems there. I was referred to a vascular clinic, where they found no cause - but unfortunately at that point things went wrong as the GP then treated me as if I had a vascular problem. I was given ineffective stockings and prescribed diuretics. Over that year my leg got worse and worse and I had several episodes of cellulitis, and the swelling extended to my thigh as well.

In the end I asked for another referral to the vascular clinic, where at last I was told clearly that it was lymphoedema and I needed a referral from GP to specialist clinic.

At that point I did my own research, found this group, checked out what specialist NHS service was available in my area and got an appropriate referral from my GP.

The wonderful specialist nurse measured me for an appropriate support stocking, which I have now been wearing for over a year with excellent results - my leg has reduced from 69% at my first appointment to 25% at the most recent.

Because there was no indication of why I had suddenly developed lympnoedema, the specialist clinic then recommended a referral to St Georges in London for lymphoscintigraphy as this was not available locally. This led to a diagnosis of primary lymphoedema affecting both legs (but fortunately only one is symptomatic). No family history of anything similar.

However - the good news is that with the proper treatment my leg has considerably reduced in size, I've had no recurrence of cellulitis, and I'm back to being very active. I'm a slim 64 and walk at least 5 miles every day, and up to 15 miles sometimes. Wearing a thick support stocking is a small price to pay!

My advice would be to do your research before your clinic appointment, and know what questions you want to know the answers to.

Good luck! it sounds like you're already on the right track.

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Doro9
Doro9
in reply to DeborahS32

Hi DeborahS32!

Thank you so much for sharing your story! I am sorry to read that you had to wait such a long time for your diagnosis. I'm glad you got there in the end and are feeling well now :-)

Actually, my diagnosis has not been as straight forward as it seems. I had a mini-stroke when I was young so it was pressing to rule out any possible risk of vascular malfunction. This was done in Spain's A&E (where I was visiting my family) and later in Scotland, where I live.

After all necessary checks, I went to see my GP who suggested it was... a hernia! I could feel that it wasn't, plus I have a friend in Spain who is a surgeon and told me that just couldn't be (she treats cases of hernia daily). I had to go private to prove to my GP that it wasn't a hernia - all they could find was a bunch of swollen lymph nodes.

From then on, all the attention was placed on my lymph nodes, which started to swell all over my body. They checked me for almost everything, all results came fine. Last time I saw my GP I enquired about my leg - he told me to return in 6 months time.

I went to Spain to visit my family and I asked my surgeon friend if she could have a look at my leg. She is a digestive consultant so she took me to see a vascular surgeon. He ultrasounded me from waist down, placing careful attention to any possible blockage, of which he found none. It was him who then suggested primary lymphoedema and referred me for a lymphoscintigraphy next April.

When I came back to Scotland, I had to get back to the GP due to my leg infection. It was a different doctor this time and, when I told her the whole story, she said I was lucky that my friend took me to see the vascular surgeon. She then referred me to the lymphoedema clinic and now I'm waiting for my letter.

So, it has been a very intense six months. I have been misdiagnosed before (I was told I had multiple sclerosis when I had that mini-stroke) so I guess I'm now a bit restless regarding doctors' opinions.

Anyway, what a long post! I feel I needed to get it out of my chest, so sorry about that!

I am quite an active person as well (love walking and running) so it is very encouraging to read that you are able to exercise so much.

Thanks for the tips and the encouragement!

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Als315

I started with very similar symptoms. Originally my left leg would swells below the knee and over night when i slept it would go back down this was for the first six month. Then it reversed and the swelling moved to mostly my upper leg and thigh. It took over a year for someone to diagnose me as Lymphedema. Good luck but maybe start wearing compression stockings in the meantime? My biggest regret was not starting earlier but i didn’t know i should...

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Doro9
Doro9
in reply to Als315

Hi Als315!

Thank you so much for your reply and the tip. I am really sorry to read that it took almost a year to get your diagnosis. Sadly, this seems a common situation for most people on this forum...

I wore compression socks for a couple of days and I think that was when my thighs got red and sore. I was obviously wearing the wrong ones...

Could you recommend any generic brand/size in the meantime? I am completely lost as no one has really measured me yet.

Thanks for the help. I really appreciate it :-)

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Lynora
Lynora
in reply to Doro9

Hi Doro9 - you say above that you have been referred to a lymphoedema clinic. Don't invest hard earned dosh in 'off the shelf' garments until you have been seen. The clinic will assess and measure you for the most appropriate product - as you have already found - sometimes they don't work, and can cause problems. Plus, you should get them on prescription. In the meantime, could you try and get some manual lymphatic drainage? There are practitioners listed on mlduk.org.uk or look at some useful YouTube 'self lymphatic drainage' videos. The LSN also sell excellent self-help instructional DVD's.

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Doro9
Doro9
in reply to Lynora

Hi Lynora!

Wow! Thank you so much for the advice! Yes, I think I would rather wait to be seen, as I don't want to mess up again :-) Thank you for sharing the link. I can see there are a couple of therapists in my area, so I will enquire whether MLD will help at this point.

Yes, the LSN website is excellent! I have learnt all I know about lymphoedema there and on this fantastic forum. I started doing SLD with their NHS Wales videos, but I stopped to avoid spreading the infection throughout my body. Perhaps I should order the DVD instead :-)

Thanks again for the amazing tips!

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