Member has chosen to not make this information public.

Groups (1)


Member not yet following any Pages.

Posts (6)

Wed, Feb 26 11:17am · Livedoid vasculopathy in Blood Cancers & Disorders

Yes. They have done a dopplers on my feet. I have also had ultrasound from the groin to the foot. My feet are not swelling anymore since I have been treating for the diabetes. We believe it went undiagnosed for some time. My blood sugar levels were off the charts high and we are bringing them down slowly but not without their fun side effects. I am hoping the Xarelto will help in healing with both the LV and Diabetes. I don't believe the two are linked though. I just have the luck of bad genes in the family with Diabetes. It gets frustrating when I get treated and diagnosed with something it is lifelong…. Just once it would be nice to go the doctor and it be one and done. I know we all live with this disease and it definitely has its lows. I can't believe I didn't look for a support group before now. It just feels good to be able to share experiences and lift each other up in ways that probably nobody else can.

Tue, Feb 25 1:16pm · Livedoid vasculopathy in Blood Cancers & Disorders

I have an appointment with Rheumatology next week. I was recently tested for Lupus and the test was negative. However, I did get diagnosed with diabetes. *sigh* I am wondering if anyone else has diabetes with LV and how it has affected the healing process. I did started back on the Xarelto and it did seem to help heal the ulcers last time and I was in remission for over a year. Hoping I have that same luck now.

Thu, Feb 13 1:38pm · Livedoid vasculopathy in Blood Cancers & Disorders

Thank you, Ruth. I agree that we are not a one size fits all group. I was diagnosed and treated at Mayo Clinic for the past decade before moving. I remember clearly that they said we all have different extremes and symptoms. I have neuropathy with mine and the medications for that make me extremely nauseated and dizzy. Pentoxyfilene gives me the worst headaches and I am fatigued all the time. It is hard to remember what normal was actually like. I did take Xarelto for a year and it was a godsend but it is so expensive even with insurance. I did not have any breakouts on Xarelto at all.

Thu, Feb 13 1:05pm · Livedoid vasculopathy in Blood Cancers & Disorders

Thank you, Zenk. I had a neurologist who had his own cream that he used to give me and it was expensive but it was worth every penny. Now that I have moved out of state and am having to go through the gauntlet of finding a new doc for this, I'm having a breakout after a year of remission. The timing couldn't be worse but we do what we have to. I will bring in the recipe for your cream to my Primary Care Physician next week to see if this is something I can get. Thanks!

Wed, Feb 12 1:23pm · Livedoid vasculopathy in Blood Cancers & Disorders

What types of topical pain killers is everyone using? How do they work? Last night I did not get much sleep for the pain in my feet. I have two ulcers on the instep of my left foot that were zinging me all night last night. I am looking to see if there is something that can take the edge off long enough to let me sleep.

Tue, Feb 11 3:52pm · Livedoid vasculopathy in Blood Cancers & Disorders

Hi there….
I used to be treated at Mayo Clinic by a wonderful doctor who is my hero! It took three long painful years to get my diagnosis. Dr. David Wetter was the one who figured out the puzzle. I was sent to Derm, then to vascular and then neuro and then back to Derm. I say all of that because now I have moved to be near family here in Fort Wayne, IN and I am starting all over again. Nobody has heard of this condition and nobody knows where to send me. I am in the middle of what I call a "break out" and I am being sent to Dermatology next month. If they can't help me, the plan is to send me to Rheumatology. If they can't help me, the plan is to send me to cardio-vascular. I have been in remission for about a year and am now going through a break out. It's frustrating and upsetting to be in so much pain and feel like you are going through it alone.

I am noticing that other with LV also have some sort of immune deficient disease. I have always felt like the LV diagnosis was only half the problem. Every biopsy they took (and there were several), I ended up in the hospital on IV antibiotics because I wound up with cellulitis. Not once or twice but every time they biopsied me. My body was not able to fight off whatever pathogen I was fighting. I am extremely fatigued all the time and some days it takes every fiber of my being to get up out of bed. Joint aches, swelling of feet and ankles…. red patches on my cheeks. I can't address any of these issues until I am being seen by the doctor and specialty who will take me on here.

I am sorry. I would love to hear if I am crazy or if this is something to pursue? It has been a bit of a rough patch for me at the moment. Does anybody else suffer from neuropathy with LV? I do.