Suspicion of primary lymphoedema: Hi all I need advice... - LSN

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Suspicion of primary lymphoedema


Hi all

I need advice regarding what is recently going on with my leg. I am 29 years old female. Since March I started having strange sensations in my left leg's calf, like slight tingling a couple of times a day (no pain) and when doing exercises like calf raises - standing on toes and back down - there is a prominent tiredness of the left leg compared to the right one. In the beginning of summer, I started noticing a slight swelling in the ankle, foot is normal. Swelling almost does not have pitting, maybe if holding a finger for a long time, there might be slight pitting. The swelling is soft and skin is unchanged. This swelling is very mild, gets a bit less after night rest but never goes away completely and returns immediately as I am on my feet. Leg gets tired when I need to walk a lot but sometimes it is tired also without much walking. It feels heavy and kind of "feels" clothes on it (normal leg does not "feel" clothes). Sometimes there might be pain under the knee area. Sometimes when there are pins and needles, it feels like the fever going through the whole body. I noticed burning sensation in the sun. Sometimes I feel pins and needles in the thigh. Interestingly, I can have pins and needles on the front side of the calf of the right leg too but it looks completely normal.

I was scared by all this and visited vascular surgeon. He did ultrasound of veins and found that the left leg has reflux of both great and small saphenous veins, the right one has reflux of great saphenous vein. These veins were not dilated. But his opinion was that these vein changes can't cause my symptoms and though it might be lymphoedema. He sent me to lymphoscintigraphy. The result was "symmetrical and normal passage of tracer in both legs"! Therefore, he did an absolutely stupid conclusion - you have lipoedema!

I am not fat and not prone to overweight, also lipoedema is ALWAYS bilateral but my problem is only with one leg. I do not trust this diagnosis and plan to continue investigations, I want to do leg MRI to visualise lymph vessels and actually see their structure. Will do blood test and check kidney, although internal organs would give bilateral swelling.

I also have lower back pain and think if any nerve issue can cause leg pain but it is usually not associated with swelling?

What do you think - does it look like initial stage of lymphoedema? Why lymphoscintigraphy was normal? Can it be imprecise in the initial stages? I read a lot of articles and one says - it can identify lymph stasis even if there is no swelling yet (subclinical stage), but another says that in initial stages it is prone to error.

Please help. What other investigations I may need?


13 Replies

Where are you based? If a lymphoscintigraphy showed normal uptake of tracer, then it is unlikely to be unilateral primary lyphoedema. Were the groin nodes normal? If the uptake was timed, and was very slow it may have made the radiographer think lipoedema - but as you say, it's normally bi-lateral. Did the consultant consider venous insufficiency, which can cause oedema?

Have your legs been measured for monitoring over a few weeks? Have you tried compression to see if it alleviates the discomfort in the leg?

in reply to Lynora

Thank you for your response!

I am based in London and did these investigations here in private clinic.

I write the report of lymphoscintigraphy:

"Dynamic and static images of the lower limbs and whole body sweep were obtained following the intra-dermal injection of 20 MBq Tc-99m nano colloid in the 1st web space of each foot.

Early dynamic sequence shows symmetrical transit of tracer in the lymphatic channels of both lower limbs.

Delayed images show normal and symmetrical passage of tracer to the inguinal and pelvic lymph nodes as well as appearance of tracer in the liver.

Conclusion: normal lymphoscintigram with no evidence of lymphoedema."

There was nothing about lipoedema in the report, it was already a thought of the consultant which I think is very wrong because of its bilateral nature and it should be painful to touch. I don't have pain when touching the swelling.

Regarding veins, although there is reflux of great and small saphenous veins, he said that this can't cause my symptoms at this stage. Obviously reflux was not severe. And he left me with nothing but I will come back to him and request leg MRI. I measured legs once, a difference is small but I review them constantly and comparing to the beginning of summer the swelling is now slightly bigger. I didn't do much compression, I only wear firm hold stockings from pharmacy. Doesn't feel like they help.

I am thinking if I can trust conclusions of lymphoscintigraphy and radiologist? Can they actually see nodes and vessels? They told me that no, you need xray or MRI for that but I read that some lymphatic structure can be seen.

in reply to Omml

The lymphscintigraphy is the best way to 'see' the lymph function. Were you not shown the images as they did the scan?

Has the vascular consultant recommended any other diagnostic investigations? You could ask to see a lymphologist at BMI Parkside Hospital - Kristiana Gordon - she may be able to confirm Lymphoedema or give an opinion about other conditions if she confirms it not to be Lymphoedema

in reply to Lynora

They gave me CD but I'm not sure I will understand if I see the pictures.

The problem is that the vascular didn't recommend anything else and just concluded lipoedema. Unbelievable for a private specialist.

Thanks for lympholigist name, I will try to see her.

It's unlikely you have Lymphoedema as your Lymphoscintigraphy was normal. Reflux of veins can cause swelling according to my Vascular surgeon. You will be in very good hands with the lovely and knowledgable Dr Kristiana Gordon who is a Lympho-Vascular Specialist and clinical lead at St. George's Hospital Lymphoedema Clinic.

Fashion support tights don't provide much compression and it may be that a light non-prescription class 1 sock would help your leg feel better while you wait to see dr Gordon. They are best obtained from a compression provider over the internet - try looking at Daylong compression. Thy have products that don't require a prescription and are very helpful on their phone line to find something suits. I had to do this before given prescription garments for my bilateral LE as I couldn't walk without compression due to swelling and pain

in reply to CCT67

Thank you!

Also the question: does lymphoedema swelling starts from foot or ankle or both at the same time?

in reply to Omml

Mine started at 30 in my thigh, suddenly swelled up in 24 hours.

It is different for everyone. Mine started in ankle, foot and leg (below knee) at the same time in my right leg (aged 11). Then 20 years later the same happened in my left leg.

Eliminate the swelling - think about sensation changes. Could be spinal or peripheral nerves. Lower back trouble .... Get your GP to investigate the sensation changes. You may have a couple of things underlying your symptoms. Maybe find a physiotherapist who does lymphoedema treatment - they can check out sensation, reflexes, swelling ... and liaise with your doctors too.

Yes, I will gradually investigate everything. I thought about nerves and generally it is not typical to have swelling because of muscular-sceletal problems but who knows. When I sleep or am in bed, sensations go away.

Today and yesterday I started having pain on the back of my knee... I was checked for DVT in the beginning of August, so if the vascular surgeon was not a complete idiot, it shouldn't be related to that. No other knee pain. Really don't know what is going on with me.

Is this kind of pain typical for lymphoedema?

Any kind of pain or sudden change of symptoms requires medical help - if you haven't already - please see a doctor.

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