← Return to Livedoid Vasculopathy or Livedo Reticularis (whole body face white)

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@colleenyoung

Welcome @canderson12. I was relieved upon reading at the end of your message that you have an appointment at Mayo Clinic coming up. Fellow members @dawn_giacabazi and @predictable can attest to the fact that you will get a multidisciplinary and whole-person consult at Mayo.

In the meantime, I’d like to connect you with other members who have similar conditions as you and discussions about Lividoid Vasculopathy and MGUS. Please see these discussions:

– Treatment options for Lividoid Vasculopathy (LV) http://mayocl.in/2cH8jhA where you’ll meet @gonefishinmt @mlemieux @zenk @marlene64 @vickieb @patientrea and more
– Livedoid vasculopathy http://mayocl.in/2dd7pKa
– MGUS http://mayocl.in/2cKG3tv where you’ll meet @momofthree1 @lisa54 @bonniecanby @billh and others too.

Each of these discussion were started years ago and are still active.
When is your appointment at Mayo?

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Replies to "Welcome @canderson12. I was relieved upon reading at the end of your message that you have..."

I had a appointment with Hem/Onc Oct 12 at 8:30 which is 2 hour drive, so I did not make it and resheduled until Dec for my husband to drive me as I do not think I can drive that far due to my symptoms are too troublesome . During the hurricane we lost power for 2 days and the second day I was so overheated i was having palpitations then my skin on my face turned a dull white and excessive sweating and hot although my skin was cool clammy ,, well I thought I was going to pass out.
I still do not understand why as sick as I am why these doctors would make me travel to Mayo ? I have been there before to be seen by Primary care and then Pain which was a wasted visit as nothing was done to give me a better quality of life or relieve my symptoms as I refuse to sit in another ER only to be scolded at “you are not sick enough to come to ER, your doctor was wrong to tell you to come to ER he was just being lazy and we have done extensive labs which are normal” the labs were normal CPK,CBC .. I guess they call that “extensive” I could go on and on how ignorant I have been treated by MD’s, or treated like “it is all in my head”
I am hesitant to get my hopes up only to have them deflated, I do not know what has happened to the medical professionals field as there seems to be very few doctors wanting to use the knowledge they went to school for and took the hypocratic oath “DO NO HARM” when a patient like myself at 59 years old has to settle for ??
I think at this point with the solditary scalp lesion which caused ulceraton bleeds scabs and painful and not healed in 4 years and it still there ? Why can’t someone cut this out and suture me up as the Dermatologist are perplexed? Biopsied “Necrotizing Folliculitis” then Pre cancer and frozen but still there, sent to Rheum and Rheum negative.
Sent to Moffits by my pain management as there was no more they could do for me and as I stated my health has been on a downhill slide (worsening darker Livedo, pain poorly managed, urine dark amber with occasional pink staining when wiping with a foul odor and low amount, no appetite with weight loss >20 loss, skin changes most noticable on nasal area with peeling enlarged pores, redness and lately my pores bleed?
It is just getting too much too many symptoms that really all I want is Palliative care but I am told I am too young, it would be giving up. well I kinda lost any hope of anyone finding out why and my husband said ” No body has helped you and all I have done is driven you hours away only to be told “Go to this place”
I was even sent to a shrink my my male primary care and was shocked to find out I was there to rule out “Hypocrondia” I was flabbergasted as anyone that looks at me can see I am not well!! The shrink ruled it out but now how can I trust this doctor??
I am sick of hearing my symptoms are complex ,,, well as far as I am concerned it has been the neglect of ,my medical care , inaccurate medical documentation by some doctors who have written my pain as “ALL OVER”: when I never stayed that as it has always been to the Right upper Extremity area, then I saw someone put ‘Heart Disease” how can I have heart disease when I never knew I had it and not on any high blood pressure meds . The only heart related was a PVC on EEG when I had that Epiglottis tumor that was probably pushing on something but when repeated after removal it was gone.
I am unable to correct my medical records and I wonder what else is incorrect .
I do not think it is too much to ask for a better quality life have my symptoms treated (the excessive sweating causing feeling pf passing out, my pain which causes palpitations and majority of my time spent in bed and not wanting anyone to bother me which makes it hard on ,my family as I do not get up to visit or do things with them due to I am so miserable and just want to be ;left alone and live apart and by myself as I can not get my pain managed in Maine for those few months so I stay alone here in FL

Hi, @canderson12. I am not a doctor, just a consumer of medical care and services. Trust me, though. I am deeply taken by the range of medical problems you have shared with us at Mayo Connect. I have read both of your long messages describing your concerns and your plea for understanding. As a Mentor at this web site, I’m one of the volunteers who tries to smooth the way to upgrade your experiences in getting medical attention. I am committed to helping members of the Connect family get back on the road to good care, recovery, and as much comfort as possible. And you are my priority concern right now and for the indefinite number of days ahead.

Your list of symptoms is long — and obviously vexing. Apparently, so is the list of doctors you have been dealing with in recent months. Is that right? A lot of your references point to medical terms that doctors use and that you understand at a commendable level. Am I right that you have a number of doctor’s reports addressing several of your priority medical problems, but lack a coherent strategy for dealing with them in a reasonable overarching plan of diagnosis and treatment?

Your October 12 appointment at Mayo (in Jacksonville?) had to be postponed to December, and hopefully that can be to your advantage if you’re determined to get a broader strategy in place. How did you settle on this appointment, focusing only on Hematology/Oncology? Has Mayo interviewed you and obtained the full picture that you have laid out for us on Connect? Would your trip to Mayo be less of a problem if you got Mayo’s advice on how and when to travel, where to stay nearby, and for how long?

Could you see yourself asking Mayo for a consultation to develop a broad plan for treating your whole person? Is it conceivable that this approach could lead to updating your medical records and plugging them into a comprehensive plan that a team of physicians and other medical personnel would focus on you until your hopes are realized?

I hope you’ll consider that. I speak as a person who grew up within a 90-minute drive of Mayo in Rochester, Minnesota. Several of my family have been treated there; people in our town almost always looked to Mayo for help with the most serious medical challenges — because of Mayo’s intense concern for patient wishes and welfare and their unparalleled expertise in the practice of medicine.

If you think a comprehensive reframing of your medical plan is worth a try, I’ll be glad to help get you the information on how to advance that possibility. Just get back to me here on the Connect and let me know.

I appreciate your kindness and understanding as I feel being a RN I was able to advocate quite well for myself and my disabled born son but sinch my symptoms have worsened and new symptoms appear , you know doctors do not want to hear a long list of of complaints which are due to being delayed diagnosed delayed treatment in Maine for that fully detached shoulder which is now unoperatable after i had a great surgeon in Ocala repair the shoulder as best he could but the damage to nearby tissues were great and now I am left with  a shoulder thta has severe cartiligde loss torn bicep and inflammed rods. I have seen 5 Oncologist !!! and just saw Dr. S. Ailawadhi who ordered a "Rad Met Bone Survey Xray" and labs and 24 urine thta I just mailed out today but I am quite surprised I am not having a follow up with him instead he going to call me, OH yes I know I cardiac issues have done everything but echo which is scheduled next week then  follow up with Cardioloogist.. I realy wanted to speak to Dr Ailawadhi to see if I am eligible for Hospice care because I really do not feel anyone will find out the problem and my husband is getting mad at all these appointments and hours of travels to these doctors comong out with no answer only follow ups. My 5 plus year scalp sore solitary has not healed in over 5 yeras causes me pain bleeding and scabbing I have had it biopsied 2 times one time it was "Necrotizing folliculitis" I know I have deep ulcers where it has started to heal but then reappered. i asked this this Derm to cut the whole thing out as it was 1/2 dollar size after he froze it again, i had pain had to change my pillow case daily so thinking he was going to remove it yesrerday he did what i did not want a'another small biopsy" I said why? he said Obama care. I am Catholic do not beieve in suicide but do not want to live in this pain in my upper right exremeity and non healing scalp sore that never itches it is painful. Why don't these experts see this. I am also know without a primary. . thanks for listening  just turned 60 and can not believe this is my life

@canderson12, this all must be really tough. I can hear the exhaustion in your message. I’m sending prayers to you tonight. Remember to take it one day at a time and if that seems to be too much….one hour at a time.

With the medical issues you have can you get a referral to a general internist to manage your care since you don’t have a primary?

Hi @canderson12,

I am so truly sorry to know that you are going through such misery. While doing some research I came across an interesting paper in one of the medical journals: http://bit.ly/2iEfF7d
Have any of your doctors suggested Doxycycline Therapy?

Did you see Dr. Ailawadhi at Mayo Clinic in Jacksonville? You can send a message to your physician (Dr. Sikander Ailawadhi) directly through the Patient Online Services. If you don’t already have an account for patient portal, you can sign up here: http://mayocl.in/2iIXDmH
And as @jamienolson mentioned, it would be beneficial to get a referral to a general internist to manage your care.

@canderson12, you are being an advocate for your own health, so please do not lose faith.

He never made a appointment to see me , some one in his office said my labs were okay? I am so sick of being told one thing by one doctor and then my Palliative care doctor who is quite knowledable and could see how mottled my skin was an my white pastey face told me that Moffitts labs were not normal? I really think if lets say your Kappa/Lappa FLC is high but not high enough as well as other immunity labs and the original Oncologist diagnosed me with MGUS and this has stuck that these Oncoogist know something is not right with me but thye could care less to further test for other internal cancers or genetic testing or cancer testing. They do not observe the patient's body ( like full body mottled skin, solidary scalp lesion that has not healed over 5 years 1st biopsy "necrotizing folliculitis" now pre cancer and frozen again and biopsied again making the lesion more indurated and size 1/2 dollar. No I give up on Mayo ! To me being as sick as I am and my urine smelling like a sewer with occasiional bleeding and then I forgot to write the estimate urine in 24 hour urine when mailed back so the lab guessed which it was over the amount but I really do not care anymore as Mayo again has been a failure. But thank you for your concern. . Nice of you to ask about the  drug you spoke about but I am pretty fed up. I am looking for a new primary doctor who can maybe figure everything out because I have been genetic tested Narcolepsy as positive which is a autoimmune disease and my father is Quebec native born and Quebec Genetics recommend all Quebec born children of Quebec parents be genetically tested for "founders effects " disease and the list is long I suggested to the DR but never heard back, My fathers side of family most of them his mother, my aunts had sleeping disorders but never went to doctors and I can see why , Thye would of been put in a crazy home, because of the symptoms that go along with Narcolepsy are similair to pschotic features, I was the 1st in my family to tell a doctor and ever since it has been down hill. University Standford Narcolepsy research DR Mignot has done wonderful research on this rare disease and how to treat it as even the experienced Narcolepsy doctors I have ever seen have no clue about treating the individual patient according to there sleep studies as my Narcolespy is "the most severe central hypersomnia that in all the decades of treating Narcolepsy Cathy is the worse" My sleep latency is 0.5-1 minutes to sleep but rather than work with Dr Mignot which he offers to doctors free in treating as PDR can not be used in  dosage form as someomne like myself need higher dosages and the "addicition they worry about is non existing" so it has been decades trying to get a quality of life with my Narcolepsy and have not achieved it , why would I think Mayo doctors would be able to help me. That appointment and results via phone by ?? was a insult to professional medical care, I was not given any options on who to see or what to do. I used to be a RN and will never be able to work again, let my license lapse but as sick as I am I know that was not professional behavior in patient care.Cathy

@canderson12, I might suggest that you call the Office of Patient Experience to talk about your experience. You can call them between 8 am and 5 pm at this number 507-284-4988.
Might I ask what your palliative care doctor recommends?

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