Livedoid vasculopathy

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.

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!

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 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, 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 @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

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 />

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.

Take care!
Martin

Its just so wonderful having a place i can talk and learn!
Thank you

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!