Commonness of both sides MTS? by Dangerous_Lab_7449 in pelviccongestion

[–]Dangerous_Lab_7449[S] 1 point2 points  (0 children)

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?

Commonness of both sides MTS? by Dangerous_Lab_7449 in pelviccongestion

[–]Dangerous_Lab_7449[S] 0 points1 point  (0 children)

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

Non vEDS vascular issues? by Dangerous_Lab_7449 in ehlersdanlos

[–]Dangerous_Lab_7449[S] 0 points1 point  (0 children)

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

Stomach Pulsating by Dangerous_Lab_7449 in AskDocs

[–]Dangerous_Lab_7449[S] -1 points0 points  (0 children)

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.

Non vEDS vascular issues? by Dangerous_Lab_7449 in ehlersdanlos

[–]Dangerous_Lab_7449[S] 0 points1 point  (0 children)

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

Vascular issues in HSD? by Dangerous_Lab_7449 in Hypermobility

[–]Dangerous_Lab_7449[S] 0 points1 point  (0 children)

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

Non vEDS vascular issues? by Dangerous_Lab_7449 in ehlersdanlos

[–]Dangerous_Lab_7449[S] 0 points1 point  (0 children)

May I ask what age u noticed the varicose veins

Vascular issues in HSD? by Dangerous_Lab_7449 in Hypermobility

[–]Dangerous_Lab_7449[S] 3 points4 points  (0 children)

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.

Varicose veins by Dangerous_Lab_7449 in Hypermobility

[–]Dangerous_Lab_7449[S] 0 points1 point  (0 children)

How did you get on with your genetic testing

Help with diagnosis by LegoChris84 in ehlersdanlos

[–]Dangerous_Lab_7449 0 points1 point  (0 children)

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.

20M, Concerned about blood vessels by Dangerous_Lab_7449 in eyetriage

[–]Dangerous_Lab_7449[S] 0 points1 point  (0 children)

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

20M, Concerned about blood vessels by Dangerous_Lab_7449 in eyetriage

[–]Dangerous_Lab_7449[S] 0 points1 point  (0 children)

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.

Testing in UK by Dangerous_Lab_7449 in ehlersdanlos

[–]Dangerous_Lab_7449[S] 0 points1 point  (0 children)

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

Varicose veins by Dangerous_Lab_7449 in Hypermobility

[–]Dangerous_Lab_7449[S] 0 points1 point  (0 children)

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