Livedoid vasculopathy

Thank you so much for your reply.<br />
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. <br />
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.<br />
<br />
I am taking your advice and seeing my dentist.<br />
<br />
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.<br />
<br />
The Dr put me on Pentoxifylline. <br />
<br />
Thank you again!<br />
<br />

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.

LV Marbling:
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.

Weight Loss:
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.

Jaw Pain:
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.

Take care

Regards,
Martin Lemieux

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.

Hi all, not sure if you know, but there's another discussion on LV as well. Some good information being shared here:

Treatment options for Livedoid Vasculopathy (LV):
https://connect.mayoclinic.org/discussion/i-am-looking-for-outcomes-in-the-use-of-blood-thinners-in/
Regards,
Martin Lemieux
@Martin_Lemieux

Hi Angela\'s Mom,<br />
<br />
Mayo sent some Drs to Detroit Lakes MN a couple years ago who were<br />
associated with the LV group. My local practitioner who had done testing<br />
on me when she figured out what was wrong with my ankle, contacted the Drs.<br />
to try to get them to see me. They weren\'t interested, I am not sick<br />
enough for them to be interested in me. What they don\'t seem to realize is<br />
that they might just learn something from working with people who seem to<br />
have some immunity to the disorder. After working in genetics research for<br />
40 years I have seen first hand that it pays in the long run to look at all<br />
the data, not just the parts that agree with your preconceived theories.<br />
And yes, I do make some Drs. uncomfortable because I ask questions.<br />
<br />
Sheila<br />

Hi Angelsmom,

I completely understand your frustrations. After 6 Years, none of my wounds have closed or gotten smaller in any way. I was on Xeralto for a long time since I have to be on thinners for life after having blood clots on and off for over 18 years now.

For pain, I must take oxy 40's, 10's, Percocets, and anti-inflamatory pills daily. sleeping is a hasstle, my body naturally props one foot over the other to protect the wounds. having someone else in bed with me is always scary since they can easily kick my legs at any time.

I see Canada's leading wound care specialist; Dr. Sibald and his team, but even they are stumped. We recently put me on Innohep injections daily. Its low-molecular weight hepparin which is a known therapy for hard to manage LV and wound care. This treatment seems to have great effect on my legs, especially inflamation, and being able to see small changes in the size of my wounds. the only downfall of course is having to give myself more pain, and the bruising on my stomach.

Thank you for the idea of using a wash basin to wash your feet and legs, I have these plastic "cast protectors" which I got from Walmart online that allow me to strap my lower legs in the protectors to be able to take showers like a nowmal human being! that has been a huge boost in lifestyle.

its amazing how small things in life seem so wonderful.

I find eating 2 Activia probiotic yogurts is a must for keeping the wounds healthy and clean. Bacteria doesnt seem to stand a chance when I keep a regular healthy diet.

At the moment I have to change my legs twice a week which take up to an hour to do, coupled with massive pain. I used to go to a wound care clinic weekly, but now I only go once a month for supplies since they taught me to change my own legs. In the beginning others changed them for me, but would end up doing more harm than good, not to mention they would give me more pain from being careless. nowadays, no one is allowed to touch my legs lol I guess 6 years of experience with wound care has made me somewhat of a pro at it. if you can, clean your own wounds, only you know what feels best for them.

Im sure I have will have more to share later.

I wish you all the best, stay safe!

More diagnoses time. I've been okay as of late but still have persistent ulcers on my left foot. I'm on a blood thinner now (plavix) and the case has gotten more complex I was diagnosed with polycythemia.

Sheila can you travel to the Mayo clinic in Rochester Minn. and have them<br />
consult with you local MD?<br />
<br />
<br />

Hi Sheila Hi Martin: Sheila if you wrote at Halloween time I sure did not<br />
get the message. Where do you go for care? I live near Boston so I go to<br />
the wound and connective disease clinics at Brigham and Women\'s Hospital a<br />
Harvard Hospital. They are experienced at Livedoid vasculopathy maybe the<br />
most experienced in New England.Yesterday Dr. Lin pronounced my last wound<br />
healed after 6 months . That\'s the shortest time I\'ve ever had a wound. I<br />
have closed a 16 month wound with apligraft but it has stayed closed. This<br />
time time the MDs debrided my wound and I used Regranex ointment on it It\'s<br />
terribly expensive 2000$ for pack of 4 tubes,but with MD help insurance<br />
covered it. It re granulates the wound. I covered it with Prisma ,adaptix,<br />
gauze and Duoderm. For preventative medicine I use Healthy Feet ointment<br />
over the counter for diabetic feet . It has alginate that increases blood<br />
flow around the foot but is not but directly on wound. I also use Elastic<br />
stockings 39 to 40 Hg pressure daily, dipyridamole/persantine 25 mg 3x day,<br />
trental 3x day 400 mg. to increase blood flow. For pain I am intolerant of<br />
aspirin products ( also why I have to take persantine to decrease blood<br />
clotting. When pain was bad they gave me morphine in a gel. It only<br />
affected my foot and was not absorbed to the rest of the body which was<br />
awesome. I have also used lyrica but the most important thing is to avoid<br />
infection.When the wound was open I took great care in washing my foot in a<br />
separate basin never the tub,with an antibiotic presurgical soap.<br />
I too tend to get wounds in fall. Is it the colder weather? Is it<br />
seasonal allergens aggravating our auto immune systems which is also a<br />
system that creates blood clots?<br />
If you are in N.E. I would suggest Brigham and Women\'s. If not Mayo<br />
must be the best hospital for LV in the rest of the country. Where do you<br />
come from?<br />
Some LVer\'s with worse cases than I have found great relief with Xarelto.<br />
May i suggest Inspire.com where you will find a great variety of people<br />
with LV due to different root causes and some with successful treatments<br />
<br />
<br />

Hi Martin,
You asked what has helped heal the ulcers. I have had only one ulcer on my ankle, about the size of a nickel now, off and on for almost 20 years. the ulcer seems to start up in the early to mid fall from a bump or bruise. Last August it just started up again after being healed for 4 months after apligrafts. The Dr. asked me if I wanted to try another graft but I said no. They cost a lot and for something that takes months to heal even after the graft and then breaks open again after only 4 months the thousands of dollars aren't worth it. I have a lot of skin allergies, so I can't use adhesives, or xeroform dressings, and NOTHING with latex near the ulcer or my whole ankle goes crazy with small blisters. I use medium weight TED stockings to hold on non latex containing wound dressings and medihoney(calcium algenate in it for structure) directly on ulcer to keep down infection. I clean the ulcer every day with a mild vinegar wash. I also get small red spots on toes and feet from the tiny aneurisms breaking in my capillaries. This gets worse if I stand for any length of time, and if I drive for long distances. I have to get out and move my legs, walk, dance, whatever. When I sit I have my foot up on a table, or a box at work. My ulcer doesn't like being damp, so I try to keep the moisture content of anything I put on it to a minimum. It will heal from the bottom up, but it seems to take forever. I take 2 aspirin at nite to try head off blood clots, and I take 2 ibuprophen in the morning to lessen the pain when I change the dressing on the ulcer. If I want to spend a miserable nite, I change the ulcer dressing before bed and then try to find a spot where the ulcer isn't touched by covers, or my foot, etc. This probably won't kill us, but it makes our lives painful and downright miserable at times!

Sorry I can't be of more help. What we need is a medical research team that analyses the proteins, collagen in our capillaries to find out why they form aneurisms. Is anybody in the medical department at Mayo listening? We need to know what is wrong with the proteins, why this happens and then we may be able to figure out a way to improve the system. I have been in genetics research for 40 years and this is a genetics problem. Genetics, factor 5 Leyden, poor capillary structure and LV are all interrelated. Figure out the how and why and then you may have a good chance of finding a solution we who have LV can live with. We on this list would enjoy being able to walk again without the constant aggravating pain of LV!