Why are my legs are getting worse due... - Hughes Syndrome A...

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Why are my legs are getting worse due to the veins (ASP).

Teanna profile image
14 Replies

My legs are so black up to the knees & I was supposed to have a doplar March just gone. I’m now finding that both my feet I can no longer stretch, there is no flex in either of them. I am on 2 (Blood thinning) injections daily. Is there anything I can do for now??

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Teanna profile image
Teanna
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14 Replies
HollyHeski profile image
HollyHeskiAdministrator

Is there any way you can take pictures and send them to your specialist?

I really think they should be checked over by a doctor, to confirm just bruising and your circulation us ok.

Teanna profile image
Teanna in reply to HollyHeski

They are not bruised the (service veins) I can never remember the proper name, Varicose veins, one leg was done a couple of years ago, and the last time I saw the doctor, she wanted then scanned becoz of the discolouration and that’s why she put me on 2 injections daily. But they are getting worse. My GP is off for bereavement, but no other GP can see me becoz of my complications. I know that my blood would go down fine but very slow on coming up, so I don’t know the best thing to do.

Thank you & I hope yr well

Teanna

jetjetjet profile image
jetjetjet in reply to Teanna

Do you have an Urgent Care place you can go to maybe at a local Hospital . ??

KellyInTexas profile image
KellyInTexasAdministrator in reply to Teanna

( superficials- the superficial veins.)

I believe you are having trouble with your valves in your veins.

Visualize your veins ( not arteries- only veins) as a vertical ladder- with rungs. The valves are like the rungs , except they open and close.

These valves control flow rate of blood in venous system -slower than arterial.

I believe your valves might have been damaged by your previous DVT’s .

It’s just my feeling, you might be having pressure issues from this. Obviously I’m not a doctor...

Compression stockings, elevating legs, and hot baths can help. You would need to contact your doctor first before doing anything.

Teanna profile image
Teanna in reply to KellyInTexas

Hi Kelly, yes there the veins. I’ve had 3 DVT’s & put me on Warfarin, but becoz of my circulation, they put up my blood thinner to 2 injections daily becoz the warfarin would not stabilise my INR, one DVT was a size of an orange and was behind the knee & my INR was 4.2 I also had 2 PE’s, one I was unconscious for a day, luckily after being ICU for a little while I was ok.

I cannot wear compression bandages as I’m allergic to them, so I cannot have them strapped up. But it just worries me how black they are becoming, and now I can’t flex both feet in anyway, it’s worrying.

Thank you for replying.

Keep safe.

Teanna

Sevenstar profile image
Sevenstar in reply to Teanna

Hi , do you think it's Livedo Reticularis , a sort of purply red mottled look which is consistent with Lupus APS etc ?

Teanna profile image
Teanna in reply to Sevenstar

Hi,

I have got Lupus, but my legs are black, plus my lupus (I have got it quite severe), as you said a Red & Purple), but I do keep my legs covered at all times, plus I’ve got UV awning & the UV covering my windows. My legs started to go dark after I was diagnosed with APS, but as times gone on, it’s now black up to the knees. That’s why my haematologist Dr Cohen wanted the doplar test done, also the vascular surgeon wanted it done ASAP, but as u know, I’m on lock down and still can’t go out.

Thank you for your reply.

Teanna

Sevenstar profile image
Sevenstar in reply to Teanna

I hope you get it sorted , this lockdown isn't helping us it! I've had some issues with my legs of late numbness tingling and a cold feeling, I did speak to the doc on the phone and he arranged a Doppler scan with the nurse the following day to check circulation and for DVT , it was all fine actually so ticked that off for time being ! Neuro next! I hope you get it sorted soon!

Teanna profile image
Teanna

Hi Sevenstar1

My hospital is completely on a shut down. It’s UCLH (Professor Marcel LEVI) his the one who speaks on the news, and I got a letter that they are a complete lock down still. My GP is away, and across my notes is that , only to me seen my GP. I’ve contacted my Pain management team, and he can’t come round but will put a note in my records. So I’m in a catch 22.

Thank you for your reply

Teanna

HollyHeski profile image
HollyHeskiAdministrator in reply to Teanna

Hi, I would take pictures and write your own report, to how you are feeling, lack of movement etc and request some urgent advice, send this to your GP practice and copying in Dr Cohen. Some specialists are still doing urgent telephone consults.

You need the doplar as well as having a doctor check your blood flow. Your docters still have a duty of care to make sure all is ok.

Teanna profile image
Teanna

Hi HollyHeski

Thank you for yr advice. I’ll try on Tuesday, I’ll phone (again) Dr Cohen secretary and see if I can have a telephone appointment.

Thank you again

Teanna

GinaD profile image
GinaD

Take pictures and try to send then to the office so that whoever you speak with can SEE that this could be a time sensitive emergency! Good luck.

My understanding is that critical conditions are still treated, while bad but chronic conditions are shelved until the covid cases decline. A picture may graphically illustrate that you are critical. ( And you might mention the word ' covid' as , " It looks like a covid leg!"

Teanna profile image
Teanna in reply to GinaD

Hi GinaD

I’m not that to person to pretend that it could be the virus, I’m a person that believes in Karma. I’m going to talk to my doctors on Tuesday, they have already cancelled my appointment for next month, so I’m going to call my doctors secretary.

I know the numbers are going down but because of all my other health issues, I’m on total lock down, I can’t go out at all. So that could be the reason why they don’t want me out. But I will deferdayely call the secretary.

Thank you

Keep safe

Teanna

GinaD profile image
GinaD

Good luck,

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