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    • #24033
      Libby
      Participant

      So lately my feet have been getting so purple even when wearing socks. They fall asleep and go numb when sitting even if my legs aren’t crossed. I wasn’t sure if it was even worth mentioning to my doctor but I have definitely thought that it has gotten worse over the last six months and that the purpleness has now spread to my calves/legs at times. I emailed my doctor and showed him pictures and he ordered a vascular untrasound for my legs. I hope I am not wasting anyone’s time but I was really surprised he took me seriously this time. I had complained about purple feet before and of COURSE when I am in his office they aren’t purple so he hasn’t really taken me seriously.

      Has anyone else had purpleness that transfers to their legs or had an ultra sound on their legs to see if their is narrowing?

    • #24044
      Brittany Foster
      Keymaster

      Hi Libby,

      I had this imaging study done and they actually did an ultrasound of the legs after exercise and activity too. The purple happens when I have been standing for a certain period of time but lately has been with just minimum activity. This has to do with blood return for me and the blood not circulating properly. It is more of a circulation problem. Something that helped them diagnose this was the blood pressure readings in the legs before, during, and after exercise. Does your testing have an exercise component to it?

    • #24048
      Colleen Steele
      Keymaster

      @libby you are not wasting anyone’s time, whether the results show anything concerning or not. I’m glad to hear that your doctor took you seriously. My son has had vascular ultrasounds on his legs because of extreme discomfort and odd coloring. His doctor was mainly concerned about blood clots. Luckily he never had one.

      I’ll be looking for your update about this. Hopefully it’s more of a symptom than anything serious but it’s always best to rule out concerns.

    • #24058
      Libby
      Participant

      Hi brittany – No exercise that I know of, I guess I will find out. Just an ultrasound that will include my stomach/pelvic area where the femoral arteries begin and down my legs.

      Thanks for that validation Colleen. I ALWAYS feel like a “crazy” person who is bringing up “phantom” concerns. I guess you get to feeling that way when people don’t take you seriously!

    • #24064
      Alfred Gronroos
      Participant

      Hi Libby, I had an ultra sound of my legs which came out as nothing. My feet and legs swell and have been purple for a few years now. Docs do not seem to be concerned but I feel it is not normal. Since I have been taking water pills and blood pressure pills the swelling has gone down but does flare up. This post was very timely cuz I am going to do a search on the web to see what I can find. I guess our minds and bodies can be very complicated. Good luck on your ultra sound. Al

    • #24079
      Brittany Foster
      Keymaster

      Libby ,

      I totally understand this. I hate feeling like I have to be quiet about my symptoms. My real issues have been silenced so many times in my life that it’s super triggering when I feel like I’m not being understood or heard. I completely get where you’re coming from! Keep speaking up anyways.

    • #24080
      Brittany Foster
      Keymaster

      Al,

      For me it was nervous system related and circulation related with bloodflow to the extremeties. Also, if your oxygen is lower your bloodflow and oxygen goes where it is needed most and for our bodies, that’s not towards the peripheral like the arms and legs and that’s part of the reason for my purple and sometimes mottled skin. Libby and Al, Google “mottled skin” and it gives some pictures. This is how mine looks. Spotted sometimes like white white spots .

    • #24113
      Jen Cueva
      Moderator

      Libby, you are far from a “crazy” person. You have valid concerns about your health and procedures. It’s frustrating and belittling when the medical professionals are not validating your symptoms. You are not alone in this. Please ask any questions that you have. We are all here to support one another. I am sending you hugs from Texas.

    • #24127
      Adele
      Participant

      Yes, I’ve had image study of my legs.
      Since my disease is congenital, prior to a full Catherization diagnosing of this disease in the 1970’s, I had several (three) episodes of thrombophlebitis as a young woman and in my twenties…each time in the hospital with heparin.
      Things were very different years ago, than they are now, and we must be grateful for the medical options available to us at this time, which saves and prolongs life. Not perfect yet, but the future may bring a cure, we all hope.
      The image now, did show vascular insufficiency, but now, as a woman of a certain age, it’s o.k. Just glad for my life, long and good despite the tough challenge of PAH and DHF.

    • #24130
      Alfred Gronroos
      Participant

      Brittany- I googled, I did not like what I found. Once skin starts turning color you only live for so long. I win, my legs turned purple with a red very itchy rash. Ointment helps the itch, but the cause is still there after 5 years, numerous visits to docs, pain, swollen legs and feet, leg cramps, burning sensations in wrists , small infected spots on fingers, knucles, but I still am alive. I will survive. Al

    • #24139
      Brittany Foster
      Keymaster

      @adelemischel I definitely agree with your update. We are in this together and I think it is so helpful to have a social media group to share our frustrations and anxieties. It’s so refreshing to be able to talk with others who understand what it’s like on a personal level. I was also diagnosed with some insufficiency of my vascular system due to the congenital anomolies of my blood vessels and arteries because of congenital heart disease. How long have you had DHF? (assuming that is diastolic heart failure?) do you have preserved ejection fraction ?

    • #24140
      Brittany Foster
      Keymaster

      @alfredjohn I certainly hope that you will make it through all of those episodes. I know what you mean by the rash. Sometimes the mottled skin is a sign of circulation issues and it is usually related to the heart and vascular system but sometimes it can also have nervous system causes. At least that is what my doctors have told me about it. As long as I have reasons about WHY something is happen it makes me feel less anxious about what is going on.

    • #24161
      Adele
      Participant

      Hi Britany,
      It does sound to me that we have similar medical issues. In my case, I don’t exactly know the earliest facts….as a small child, but I remember fainting, and my parents were told I had a “heart murmur “. In Those days very little was done, and “heart disease in women was not really understood, and PH not recognized. But it seems to me it came together, both lung and heart.
      If I’m allowed to be technical in this, I can say that I was diagnosed in the early 1970’s through a Cath as having” an anomalous venous return with an ASD, and a shunt.” ….Diagnosed as a birth defect.

      I wish you well, Britany, and all the heroic fighters in our group.
      Grateful for this site.

    • #24173
      Brittany Foster
      Keymaster

      @adelemischel thank you so much! I really consider everyone here to be so strong and uplifting and this group is a huge reason why I have the strength to push forward through so much that I have been going through. To hear the stories of others is so inspiring. I was also born with a shunt and a large VSD that caused me to have PH as a baby and child. When that was repaired the PH got better but with other defects too that went undiscovered until just a few years ago, it just placed more strain on the heart and vessels and that is why I have the oxygen. Keep fighting and pushing forward ! We are always here to chat any time you need to!

    • #24581
      Libby
      Participant

      SO I had my vascular ultrasound on Wednesday. First they put blood pressure cuffs on my legs, arms and big toes. All of it was normal. Then they had me walk on a treadmill for 5 minutes and checked blood pressure again and that was normal too. They did an ultrasound on my stomach and legs and that I am waiting on results for.

      I really don’t think they will find anything. I think it is heart and lung related. I don’t know if my cardiologist ordered this test to rule it out or because he is really in denial about it being heart related!

      Brittany – I have looked up mottled skin and that is how my ankles and feet look.

    • #24588
      Brittany Foster
      Keymaster

      Hi Libby,

      it seems like you had a really similar test to the one that I had done. They also put blood pressure cuffs in placed I didn’t know you could put one! I think this was checking with the blood return and nervous system related issues like POTS that could also contribute to the blue skin if the blood isn’t circulating properly because of autonomic nervous system disorders. Maybe they wanted to look into that too with the pressure readings to see if there were any abnormalities and the way your blood is moving and circulating? Maybe it is more of a central problem like you are saying and not so much a peripheral blood flow issue! I hope they can get some answers for you. I know the look of mottled skin and it can be frightening to see at first.

    • #24609
      Colleen Steele
      Keymaster

      I’ve been thinking of you @libby. Thank you for the update. I hope the results eliminate other concerns and helps validate your heart and lung problems with your doctor.

    • #25022
      Libby
      Participant

      Update: well sure enough my results came back normal. My doctor basically just said it was confirmation that I don’t have good oxygen (Duh!). I know it was good for them to rule it out but I felt like the whole thing was sort of silly. They said as long as my feet aren’t purple or tingling ALL The time, then we are ok.

    • #25035
      Jen Cueva
      Moderator

      @libby, I am happy that it was negative. Don’t feel like it was a waste of time, it gave your doctor and you more information. Ruling things out is often needed. It is easy to feel like we wasted our time and money, but these tests are required. You are not alone with that thinking by no means.

      My feet and hands turn purple often. I know it is due to circulation and the oxygen not going where it is needed. I do not have the tingling much. Indeed, keep them updated if any new symptom arises.

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