Livedoid Vasculopathy or Livedo Reticularis (whole body face white)

Posted by canderson12 @canderson12, Oct 8, 2016

I have mottled skin that started out with a R.enlarged axilla lymph node and after biopsy worsened to full body (my biopsy was a failure as “lymph nodes fell apart during dissection”) then my R. shoulder became more painful and it was overlooked until I moved to FL and saw a Orthopedic who diagnosed “detached shoulder” on 1st visit, this was not due to trauma or fall?? I had a Bankart Repair.SLAP 2, SA , extensive debredment an d was suppose to be discharged that day but was kept overnight for observation due to “Catacholamine attack” I heard the staff speaking of this while being wheeled to my room. I was discharged the next day and strangly never saw the doctor prior to surgery or prior to discharge? When I was admitted that day the nurses put about 10 heated blankets on me as my skin was so darkly mottled.
My pain is the R. upper extremity to axilla deep achy pain and shoulder to hand that now it affects my writing also rib area. My health has deterioted a great deal since finding the axilla lump and trying to find a compassionate doctor to listen to me has been difficult.
2 years after my failed shoulder surgery I had a CT or MRI of shoulder and it was found that I have severe Chrondomalacia (cartilidge loss) which the surgeon said it will only worsen but he refuses to do surgery as did another Orthopedic at UF Shands, I was also told the bicep is “raggedity” and the 4 pins inflammed.
I also was diagnosed with MGUS due to a abnormal IgA and Beta2glycoprotein which showed my blood too thick but the doctor said “take baby asa” I then was sent to Moffits for pain by my pain management but was told “we only treat cancer pain”
I have lost faith in the medical professionals as I just saw of my diagnosis that I never was told I had ( Heart disease. Pain all over?? etcc.) Misdiagnosis or doctors using the Psych card and that all our complaints are all in our head.
I just want relief of my suffering the R. upper extremity pain, palpatations, excessive sweating but skin cool, skin changes on face flakey peeling skin , enlarged pores on nose, unexplained bruising big black ones not sore to touch, my white face that my family says I look like walking dead, no appeteite, and dark tea colored urine that is strong odor with white floaters .and lastly a scalp lesion (solidary) that has not healed in about 4 years causing ulcerating and not able to have hair professionly cut styled.
Why I seem to get to get doctors who only do blood test or send me here and there only to be discouraged and my hopes deflated. I am 59 and female and have a upcoming Mayo appointment with Hematology/Oncology and this is and will be my last if they find nothing or do nothing more than what has already been done.
Anyone had any similair…. was your Livedo diagnosed by just looking at it like mine??

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My Palliative care doctor increased my Morphine 30 mg every 4 hours , put me on B12 injections and was horrified how I have been treated by doctors and being diagnosed Livedo Reticularis via google pictures, no skin biopsies. I have had nothing more than labs and being on Medicare since 2010 I have not had 14 preventive care services that I guess you are suppose to get yearly? No physical exam whatsoever ever. My Palliative care doctor sent me back to my Pain management and her RX for Morphine increase which I did not fill but gave it to my pain management person (not a doctor ? maybe med assistant) but she scolded me for seeing a Palliative care doctor and taking care from Cancer patients who are in real need and how dare I take a space/time when someone with cancer has been withheld treatment due to you. I disagreed with her and said she had no business cursing me out as she was obviously not educated on what I have been thru . So this is how my care is and how I am insulted and humilated by health pros that have no business being in the business. All the years I was a RN I never disrespected a patient but I can tell you I have been insulted , ignored more than anyone should have to endear. I am sick of seeing new doctors cause I see them once and I do bring all my records , labs , surgeries that I believed failed as I still never got a ? as to why a visible enlarged palpative lymph node dissection biopsy gave no results as all “lymph nodes fell apart during dissection” I had cording after this and still suffer with deep achy pain in that axilla, chest wall and swelling feeling that I can not tolerate a bra ( not a pretty site) but my request for eval for lymphedema fitting bra is always ignored, then after that mess up is when the same side of the enlarged lymph node surgery my shoulder ball and socket felt detached but of course the Maine X-ray showed no detachement and 2 months later moving to FL I saw DR Manseau who happened to residency in Maine and had nothing good to say about the type of delivery care, I had surgery and he told my husband ” she must of been suffering for quite some time as the ball and socket were completely detached and caused extensive damage to other structures due to delayed treatment, he did a SLAP2, Bankart repair, ext debredment and placed 4 rods , I am still in pain 2 years later so MRI showed severe Chrondomalacia (cartilidge loss ) with bicep raggeity and pins inflammed but he said “no surgery” and sent me to UF Stands Ortho for 2nd opinion and he planned to exploratory surgery but needed the surgical reports , well once he got those he refused to touch me, I want to add I was suppose to go home that day but was kept overnight for observation due to a Catacholamine attack, which was never spoke of by Dr Manseau as to why this happened. I have been thru too much only to be shot down and I am only getting weaker, fatiqued , weightloss, falls and unsteady gait. Doctors do not like patients with multiple issues but it is not my fault it is from neglect like the Fl Oncologist saying “I was too young for cancer” and my primary who sent me to him did nothing but sent me to a shrink , he was so mad at me I thought he was going to climb over the desk as he was yelling at me ” OH you think docotrs who have had years of education should consult as a team or use internet tools to educate themselves for the sake of the patient” That was my last visit and I never went back to that primary care doc. I am just plain tired and do not think anyone will take the time or trouble as I think I am too far gone and would rather just have Hospice care so I can be with my family when my husband returmns to Maine and I have to stay in FL as I can not get my meds in Maine, but Hospice will not take me cause I am not diagnosed with cancer.

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