Anybody have purple toes ...

[EMT434]

Every night the toes on my left foot go ice cold and purple....dr says it is normal for APS patients but mine are starting to stay purple longer. ANyone else have this problem? I was diagnosed at 27 and now am 31....Also looking for members in the USA...possibly near ks or missouri to talk to....

[Hidden]

are you on coumadin? there is a serious reaction called purple toe syndrome, google it to find some info... May be worth reading...Hope its nothing

[EMT434]

Hi Kristina, I take warfarin. I didn't have this problem when I was first diagnosed but it seems to have progressed over the last year or so..Odd...lol I will google it. Thank you!

[paddyandlin]

Hi EMT welcome to the group. before and after i was on Waferin i have purple foot and hypersesativity they told me it was damage to my nerves and circulations but i would ask your doc.

Paddy

[Hidden]

Have you been diagnosed with Raynaud's? This sounds to be one of the symptoms - it usually affects the fingers but all digits are potential candidates.

[77tiger05]

I had purple toes before being diagnosed, lost my left leg!! Be very careful and make sure your doctor knows what's going on. Don't let him tell you it will be OK!!!!

[Hidden in reply to 77tiger05]

just before being diagnosed, 8 years ago my 3rd 4th and 5th toes on my left foot were amputated as a year earlier no one would look into a clott as my symtoms were oposite of a clott. well they meant veinous clott mine was an arterial clott. 4 months after loosing my toes they finally had to go looking for a clott i almost lost my leg before anyone looked into my allegations it was a clott!

[SueLovett]

I get purple hands and feet.

I have Hughes and Raynauds, also Livedo Reticularis. Sometimes my skin looks black, especially my heels which are numb.

My Consultant says it is common in this illness.

I agree you should get your Doctor to check it out.

[whynotme]

I also get purple feet especially when sitting. Funny thing though, after drinking a glass of red wine the purple areas turn bright red! and I mean almost fluorescent! and stay that way for hours. I live with daily frustration because I too was diagnosed with MS and you know what happens next......nothing....that's right, because no expert wants to claim they know anything really "wonderful" about it. I was told in Poland that I have APS and to follow it up in Canada but since my ACL titre is 22 they just volley me back to neurology....cowardly medicine. Is there an APS guru in Canada or the USA?

[Hidden in reply to whynotme]

what part of Canada?

[sr56]

I too get really dark purple feet almost black My doctor says its poor circulation from the Raynuads ( dx with that years before My dx with Hughes ) which i also get in My hands will turn real white to reddish and purple , stress and cold bring it on in my hands and fingers , My feet i notice when barefeet walking around the house also at doctors office while they are hanging off the table , if i put them up it seems to help them calm down. I waqs told thaRaynuads usaully goes along with hughes i also have sogerns ( sp ?)

I'm also from the usa ,but live in NY

[lovemyheart in reply to sr56]

Hi sr56... Im from Long Island NY

[beckyb]

Hi, I always get purple toes it is worse when i have been standing up all day at work, also i often have a purple/blue top lip i am on warfarin and have just put it down to bad circulation!?

[ppillai]

Hi EMT, my wife has the same symptoms. Similar case as your & discolorations observed from 3 months from now. It started with a pain on her great toe & tuned purple/blue at nights. Now it has spread to the last small finger & under side of foot with severe pain - mostly in night. Consulted several doctors & could not reach a proper diagnosis yet. Interested to know , could you come out of it & what treatment helped?

[Juejue11]

I am in ks. Originally from the uk. I too have the purple toe thing. My right foot is much worse than my left. Ice cold most of the time when the left is relatively normal ish. Very odd to have different coloured feet and different temperatures at the same time. My left side is weaker than the right due to a small stroke a couple of years ago. Repeated 'episodes' possible TIAs cone and go. Along with dizziness creeping numbness etc. my bowel seems to have gone to sleep lately. No urge to go and ended up at ER. Completely impacted after 3 weeks of not going. I have been eating fibre adding milk of magnesia/Phillips lots of water. Ended up with magnesium citrate. After a night in the bathroom I no longer look pregnant and can breathe again. Just hope I get the urge back. Don't want to be doing this forever