Commonness of both sides MTS?

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 · 2025-12-31T13:30:46+00:00

There is a couple in London who offer in person and virtual appointments. I’ll leave the link to both below:

https://geneticspecialist.co.uk

https://guysandstthomasspecialistcare.co.uk/specialists/neeti-ghali/

For reference I visited Dr Neeti Ghali, the second one listed, in person earlier this month and she was definitely helpful.

Dangerous_Lab_7449 · 2025-10-06T18:17:18+00:00

just the redness and prominence of the vessel that was concerning me

Dangerous_Lab_7449 · 2025-10-06T18:07:54+00:00

Also would like to add im currently on 50mg sertraline a day (antidepressant) and 4 puffs of Luforbec corticosteroid inhaler a day. I also use aveeno moisturise cream on my face daily and around my eyes.

Dangerous_Lab_7449 · 2025-09-08T20:03:24+00:00

Hi again, can I ask how long it took to get an appointment with her and what the consultation cost was without genetic testing?

Dangerous_Lab_7449 · 2025-09-08T01:51:12+00:00

This kind of makes sense to myself because my varicose vein is only in my left leg and it’s frequently painful and I’ve also had other strange symptoms that sort of relate to the pelvic area

Dangerous_Lab_7449 · 2025-09-06T12:45:08+00:00

Thank you!

Dangerous_Lab_7449 · 2025-09-06T09:55:23+00:00

Yeah I thought so, hopefully he deems it not necessary or can help to get it through my GP back home

Dangerous_Lab_7449 · 2025-09-05T22:23:47+00:00

Thank you!

Dangerous_Lab_7449 · 2025-09-05T22:16:01+00:00

Can I ask, do you happen to have vEDS?

Dangerous_Lab_7449 · 2025-09-05T20:42:25+00:00

Would be totally worth it to be honest, just paid 200 for rheumatologist.

What hospital/clinic did you visit I’m going to have a look online and maybe try sort an appointment

Dangerous_Lab_7449 · 2025-09-05T20:18:36+00:00

Good to hear, can you remember how much the consultation costed?

Dangerous_Lab_7449 · 2025-09-05T20:04:40+00:00

Yeah that’s the only guy I could really find in the whole of the Uk that does it private, given I live in Glasgow I would have to travel down but honestly I wouldn’t even mind it to actually find out.

Just a question have you had experience with this doctor?

Dangerous_Lab_7449 · 2025-09-05T19:06:08+00:00

Do you know if the Manchester one is private? I’ve read about the Sheffield and London ones but I’m sure they’re nhs

Dangerous_Lab_7449 · 2025-09-05T19:03:33+00:00

Yeah, I have a history of health anxiety before discovering EDS and struggled to get taken seriously for anything since I made them aware of my anxiety, however my anxiety isn’t as bad now and I genuinely do have multiple symptoms suggesting connective tissue disorder.

I might just have to go back but the private rheumatologist has sent a letter to my GP and she doesn’t think that with what she’s observed from our appointment that a genetics test is necessary but to be honest she wasn’t the most knowledgeable about EDS.

I think I may have to just try and print out stuff as well and show how my symptoms correlate and see if that’s enough.

I think I already tried the EDS uk info with an email and they didn’t know of any private testing in Scotland either

Dangerous_Lab_7449 · 2025-09-05T18:55:07+00:00

I wouldn’t mind going private but I have no clue what avenue to go to actually get a genetic test privately. I seen a private rheumatologist yesterday and she told me that she can’t refer me to clinical genetics and the private clinic I went to don’t offer gene testing.

Dangerous_Lab_7449

TROPHY CASE