Looking for people with the rare blood clot and leg and foot ulcer disease of Livedoid Vasculopathy. Mayo seems to be experienced at treating this disease so I thought I would find you here, I have it.
Interested in more discussions like this? Go to the Blood Cancers & Disorders group.
Hi, I’m Vickie. I recently noticed this marbling on my upper thighs. Have extreme pain in my thighs, feels Like I’ve been kicked over and over again. I’ve had one small sore that only lasted a few weeks, and after reading the stories about them, I’m thankful and scared of when I get another one. I went to my dr he had no idea how to treat this. But over the past year I have been sick. I lost over 100 pounds, muscle and joint pain. Migraines and nystagmus developed, severe jaw pain. My dr , I’m sure thought I was just asking for pain meds which made me feel terrible. Then in December I get this very scary pain in my legs and felt so weak then the purple marbling. He sent me to a dermatologist who is certain that LV is the diagnosis and is doing the blood work and biopsy. After days and days of reading about this disease I had many of the symptoms for months before the skin changed. Has anyone else had this type of scenario? But I’m scared and feel alone. Anyone that has something to say I would greatly appreciate it. Thank you for reading.
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Hi @vickieb ,
Thank you so much for sharing! I just want to say, whether you have or don’t have LV, you’re NOT alone I promise.
Have you checked Google Images and searched “Livedoid Vasculopathy”? The images are not for the weak-stomach for sure, but are necessary to see if your marbling resembles similar cases. Your doctor is doing the right actions, a biopsy is necessary for determining factors that lead to a proper diagnosis.
Migraines & Pain Meds:
If I may, can you please list the medications you’re on and daily amounts?
I only ask because not too long ago, I used to get small migraines daily and the cause was my pain medications. Since switching, my headaches have not come back.
Joint & Muscle Pains:
Also, I get a lot of joint and muscle pains, including nerve pain. Having the right combination of medications, treatments, and or natural healing methods is vital to help relieve the effects of LV and/or similar conditions. I find daily meditation, relaxation, incense and diet to be a strong factor in the quality of life one should have while dealing with these symptoms.
Do you suffer from spells of inflammation and pain? There’s some studies showing LV connected to autoimmune diseases which can affect necessary organs and wreak havoc on your system. I’m not saying your weight loss and other systems are the cause of autoimmune, but it’s something to consider discussing with your doctor. Loosing 100 pounds without an explanation is something that should be looked into and monitored before it becomes life threatening.
I too suffer from this as well. I’ve had my jaw bone tested for infections just in case. You definitely want to consult a dentist for this. Infections in the mouth can cause all sorts of problems throughout your body, better to be safe than sorry. At the moment, I’m waiting to get in a specialized hospital for repairs on my teeth. Being on blood thinners is a very high risk of bleeding and dentists aren’t usually setup to deal with surgical emergencies where are patient needs to be monitored. If you are on a blood thinner of any kind, make sure the dentist knows right away before you spend money on tests they cannot help you with.
What are the next steps that you need to take?
Has your doctor provided with a plan to tackle the: pain, weight loss and sickness?
Keep a journal:
Log ALL of your symptoms (i.e. pain, cramps, stiffness, tension, inflammation), this will help as you go. Also, I recommend keeping a journal of all medications, their known side effects and how you feel after taking them. Listening to your body is vital when it comes to dealing with LV spells and helping to prevent further damage to your body. Take pictures on a weekly basis to notice any changes in spots throughout your body.
Bring your journal to every doctor appointment. Show them your results, ask them to add to it, get copies tests results (as long as it’s free).
I truly hope this helps!
Please keep us posted on your doctors visits.
Thank you so much for your reply.
I have looked at the pictures of this terrible disease, I have the same look and have had a small sore. The dermatologist is pretty certain this is the diagnosis.
All the other symptoms I’ve experienced in rare cases have been seen in LV patients. I’m wondering if the blood work will show an underlying condition. I’m terrified of getting the sores. I have another one starting and so far it’s still small. Mine is on both my upper thighs.
I am taking your advice and seeing my dentist.
I have been sick for so long and I just want an answer. And even if it is LV, I have that all awaited answer.
The Dr put me on Pentoxifylline.
Thank you again!
You’re very welcome @vickieb … I fully understand the need to get answers (even bad news). Something is better than nothing that’s for sure! I went through similar ping-pong games with my specialist until finally one day we narrowed it down. Knowing gives you options finally.
I wish you good luck, please keep us posted.
Its just so wonderful having a place i can talk and learn!
So after rivaroxaban treatment and a 10 month remission of ulcers I have 8 total on both feet. No insurance and no pain meds. Is there a homeopathic remedy I can use? Any ideas would be helpful!
Hi Jenn, So sorry to hear about your situation. Theres an amazing book that has helped me out a great deal for home remedies to pain called:
“The end of pain”
By: Jacqueline Lagace, PhD and Jean-Yves Dionne
I highly recommend it which goes into detail on how to change your diet naturally.
I would also look into the “Fork over Knife” eating program. I am just starting this program removing meat and dairy to clear out the arterial system in order to battle wounds and clotting factors that contribute.
I hope this helps!
Welcome back Martin! It’s great to see you back on Connect. I know you’ve been busy sharing your patient experience with professionals, and a conference and more.
Jenn, I’m so glad that you chose to post a message to Connect after having followed the discussions for a while now. Welcome!
Have you been following this discussion called “Treatment options for Lividoid Vasculopathy (LV)” http://mayocl.in/2cH8jhA
@zenk @vickieb @marlene64 @gonefishinmt @patientrea do you have any thoughts about complementary therapies for LV? See Jenn’s message above.
Hi Jenn, I am so sorry about your new ulcers. Mostly, I am sorry about your lack of insurance. As you have seen, Xarelto works for a lot of us in keeping the Ulcers at bay. Were you taking Rivroxaban when your ulcers came back? Can you afford just one trip to a dermatologist or a doc that knows your LV history? Sometimes they will give you some samples and direct you to a clinic that would treat you . As far as I know, there are no proven homeopathic products or treatments that would deliver blood supply with the needed oxygen to your ulcers so you can heal. I hope you can find a way to get to a doctor who is familiar with LV.
I know how expensive Rivroxaban is, I just got a refill at Walgreens today and I nearly fell on the floor. Keep in touch Jenn. You have been so kind to me in the past. Zenk
I was diagnosed with Atrophe Blanche 22 years ago, since then I have been through sooooo many ulcers on my ankles they seemed to mimic from one leg to the other for years. I used to have to have my ulcers cauterized monthly to help heal the ulcers. For the most part I can keep them under control. But in the last few years I have gotten some that will last up to 4 or 5 months. Last summer I had them going all across my toes and in between them on my right foot which lasted 3 months. But for the most part now they come on my right ankle and stay for months. I am on one now since before Thanksgiving and I just can’t seem to kick it. I take trental, dipyridamole and folic acid. The burning is so unbearable, and for the last two ulcers I have had the new thing is the burning of the muscle up my leg. it makes it so hard to walk. I have not been told I have livedoid vasculitis but from what I read it sounds like I have that as well. I live in Michigan and have been to the University of Michigan hospital as they are the ones that found the combination of meds. . I am currently on there is nothing else they know that they can do. I found on the mayo clinic site that there was a treatment they were doing I am trying to get connected with them but I have not been successful can anyone help. Thank you.
I’m so sorry to learn about your condition, and I’m glad that you’ve come to the Connect community; you will find that you are not alone, here.
If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63. The number for Mayo Clinic in Minnesota is 507-538-3270
The name atrophie blanche is also sometimes applied to conditions associated with livedoid vasculitis, livedoid vasculopathy, or livedo reticular and patients who present with atrophie blanche may have serious vascular inflammation.
A couple of members @angelasmom and @famalvar75gmailcom have talked about atrophie blanche in the past, and i hope @spence, @amjor2, @vickieb, @swing1929, @zenk, @marlene64, @patientrea, @gonefishinmt, @mlemieux, will also join in and share their insights.
You may also wish to view this discussion about, “Treatment options for Lividoid Vasculopathy (LV)” here: http://mayocl.in/2kZ4s0k and this Mayo Clinic patient story: http://mayocl.in/1l54vIS
@grandmaabby, such debilitating conditions are not only physically draining, but can affect one’s mental/emotional well-being too; how are you finding relief right now?
I have livedoid vasculpathy
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