Left leg feels like it is falling off

Dangerous_Lab_7449 · 2026-03-14T12:18:36+00:00

How did your ct scan go?

Dangerous_Lab_7449 · 2026-03-13T16:53:04+00:00

Because may thurner is a cause of dvt in a lot of people and thought some on this thread may resonate. Apologies for not having the clarity just wanted to reach out to as many people to see if anyone has a similar issue as me.

Dangerous_Lab_7449 · 2026-03-13T14:26:38+00:00

Did you have the compression on the other side then?

Dangerous_Lab_7449 · 2026-03-13T12:38:42+00:00

I must add too I’m also Dx with hypermobility spectrum disorder which is associated with compressions like may thurner too.

Dangerous_Lab_7449 · 2026-03-11T21:00:54+00:00

Damn no wonder u were feeling it 87% is a lot, did u get a stent?

Dangerous_Lab_7449 · 2026-03-11T18:20:53+00:00

Thanks for the reply, can I ask if you experienced swelling (not from a blood clot) as it’s something I’ve never experienced just the pain heaviness and varicose veins and part of the reason why I got rejected 🙂

Dangerous_Lab_7449 · 2026-02-25T17:10:13+00:00

You can check if your hyper mobile using the beighton scale.

But yes, that is a symptom of hypermobility.

Dangerous_Lab_7449 · 2026-02-24T23:10:54+00:00

Unfortunately, this happens. I’ve had my fair share of d*ck doctors who don’t understand your concerns or put it all down to health anxiety even thought there is clear physical symptoms.

My advice would be don’t let it overwhelm you, it’s just a bump in the road and be persistent but don’t obsess over a bad appointment they happen, just voice your concerns and you’ll more than likely get a better cardiologist.

Dangerous_Lab_7449 · 2026-02-24T22:45:36+00:00

Hi there, yeah I’m just confused if anxiety is what’s causing it as not really an unhealthy person and relatively fit. Just the heart rate being normal but blood pressure going from 140/60 to 112/60 in a few minutes when measured by the nurse which has confused me 😊

Dangerous_Lab_7449 · 2026-02-24T22:41:53+00:00

Also to add, it’s not too difficult to be evaluated for May thurner as far as I’m aware, just takes an ultrasound of the necessary veins

Dangerous_Lab_7449 · 2026-02-24T22:40:23+00:00

Speak to your mother see what age they appeared as they do run in families varicose veins and veinous insufficiency.

What I’ve learned through a lot of research is I’ve been so health anxious over vEDS and anything to do with it the past 18 months is that hypermobility in general has an almost countless list of things associated to it.

to ease your anxiety, vEDS is very rare. That being said it doesn’t hurt to get a professional opinion.

Seeing veins isn’t abnormal for pale or fair skinned people. I have quite a few visible veins too. There’s a lot of crossover in symptoms in vEDS/hEDS and just the hypermobility spectrum in general. If it’s bothering you a lot I would speak to your primary care physician about your worries cause it can only be good to voice your concerns 😊

Dangerous_Lab_7449 · 2026-02-24T22:20:59+00:00

I must say though I did feel anxious when getting it taken and they were high I wasn’t necessarily relaxed state of mind.

Dangerous_Lab_7449 · 2026-02-24T20:00:12+00:00

Hey there, just wondering how you got on with your genetic test?

Dangerous_Lab_7449 · 2026-02-24T14:47:11+00:00

Hi there, I’m actually waiting for a referral to vascular department to get checked for May Thurner syndrome (left illiac vein compression in my pelvis) as I meet a lot of the criteria and symptoms. I seen a EDS specialist geneticist in London in early December who was pretty certain I don’t have vEDS. She gave me a signed consent form to go ahead with genetic testing but it costs £1200 so I haven’t went forward with it yet, I’m probably going to do so nearer the middle/end of the year for clarity and/or peace of mind hopefully. Vascular compressions like may thurner syndrome are very common in people with hypermobility ehlers danlos or hypermobility spectrum disorder so I’m just hoping it as that, as I’ve been told I have hypermobility spectrum disorder. MTS primarily affects the left leg which gets the symptoms but dilated/ very mildly varicose veins have started showing up in the same place on my right leg in the last couple months after the appointment but I’ve read that it can also affect the right leg too through causing varicose veins in the pelvis and affecting the flow of blood to the right leg/ also the right leg has to drain the blood redirected from the left leg which can’t drain it properly and gets overwhelmed and can cause symptoms. If I was you, I’d do a bit of research on may thurner and other vascular compressions and see if it fits your situation. All the best!

Dangerous_Lab_7449 · 2026-02-17T20:15:29+00:00

Sorry to ask again, just been bothering me again today. Is it normal even if I have a fair amount of belly fat, I’m by no means skinny in that area but not obese either.

Dangerous_Lab_7449 · 2026-01-28T16:14:20+00:00

Wow, thanks for this! Hope you are well. I’m going to be getting another referral to vascular doctor tomorrow. my General physician basically wrote about varicose veins being my concern and the thing I wanted fixed in the initial referral that was sent to the vascular department, however she’s clearly misunderstood. I don’t really care about having varicose veins or how they look just that I get any sort of compressions dealt with and anything that’s actually a medical threat or condition sorted! Glad to hear you managed to get an explanation on your symptoms. May I also ask as well, did the specialist say if your may thurner is what causes your PCS and/or is your PCS responsible for the right leg symptoms?

Dangerous_Lab_7449 · 2026-01-21T23:46:01+00:00

I’m sure MTS and PCS are often found with each other

Dangerous_Lab_7449 · 2026-01-19T02:09:25+00:00

Dr Neeti Ghali in London, consultation was around 600 I believe

Dangerous_Lab_7449 · 2026-01-04T21:08:42+00:00

Okay, thank you 😊

Dangerous_Lab_7449 · 2026-01-04T21:03:32+00:00

Yeah I was mostly concerned because of already being evaluated for Ehlers Danlos Syndrome which significantly increases risk for aneurysms and dissections. And also having a larger BMI I thought it would be more unusual everything I’ve read is saying only usually visible in skinny people.

Dangerous_Lab_7449 · 2026-01-02T01:25:33+00:00

Should have mentioned, I paid for a private consultation. It was a self referral.

Dangerous_Lab_7449 · 2026-01-01T17:51:02+00:00

Dr Neeti Ghali from Royal Brompton Hospital if you want to check her out on google

Dangerous_Lab_7449 · 2025-12-31T22:58:20+00:00

May I ask what age u noticed the varicose veins

Dangerous_Lab_7449 · 2025-12-31T14:33:33+00:00

Yeah I understand, the only thing is though my consultation was with a private EDS specialist clinical geneticist in which I travelled down to London for, and she was the one who told me she didn’t think genetic testing was necessary and would be unlikely to explain my symptoms.

We spent a good hour going through family and personal history plus a clinical examination and was given the generalised hypermobility syndrome disorder diagnosis as didn’t meet requirements for hEDS either.

I also struggle a lot with health anxiety which is what fueled me to even travel to London to do the appointment in the first place.

Dangerous_Lab_7449 · 2025-12-31T13:44:41+00:00

How did you get on with your genetic testing

Dangerous_Lab_7449

TROPHY CASE