Livedoid Vasculopathy or Livedo Reticularis (whole body face white)

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?

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
"

@canderson12 Hello! I just read through your posting and I can hear your frustration. It can be difficult to wait for help and be told that your situation is complicated. Mayo Connect has members with many different kinds of health issues and I'm sure that someone will respond to some of your questions.

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.

Hi Canderson, As I understand it, Many ulceration illnesses can look like Lividoid Vasculopathy. LV is diagnosed by a punch biopsy . The great thing about Mayo is that they confirm a diagnosis by ruling out illnesses by testing, and coming up with a treatment plan just for you with all our complications. They don't assume anything ,and for me it was great to have fresh eyes on a very difficult problem. Best of luck with your consultation. Zenk.

Hi @canderson12,

Please excuse my delayed response. I've read through your story twice now just to make sure I understand all that you've gone through. I hope you can see from the wonderful people who've responded, that you are not alone in this fight. I too have battled doctors, nurses, triage, a mountain of symptoms and unanswered questions for 1/2 a lifetime.

The only thing that ever got me through what seemed like an eternity of false answers, is the love from my family and friends and the hope that one day I have the strength to push through the naysayer's, unreliable sources, incompetent specialists and non-believers because there has to be someone out there willing to do the things necessary to see it through, and they have.

Never give up, give in, or give away to defeat. No one knows your body better than they do, but they need your help to properly investigate the matter further. Not sure if you keep daily accurate records? If not, I would recommend you start logging your symptoms on a daily basis, including the time you feel pain, swelling, soreness, loss of appetite and how you slept the night before.

If you haven't already, please try to get an accurate and complete record of your health history. Add them to a binder in different topics according to the type of visitation and the result, or lack thereof.

Now, I can't respond to each of your health concerns, but here's what I can respond to...

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1) Chronic Ulcers:

As @zenk stated, you definitely want to get a second opinion and biopsy of your wounds. Blood tests are not enough; a full biopsy of the skin is necessary to see what kind of chronic damage is being done. Find a competent dermatologist. I had to go through 3 of the best to find one that suited my case and had the knowledge necessary to make sound, appropriate decisions. Skin care is one of humanities most sought after holly-grail's.

Now it might be a case like mine. My vascular network, damaged and bruised is the cause of my ulcers. Blood pools, valves don't work, etc. Having a surgery can definitely affect your U-R system in the same fashion. Whenever we have any sort of traumatic event, the long-term damage is what affects us the most.

Interventional Radiologist:
if you're really interested to see what's going on with your vascular system, I would recommend you go see an Interventional Radiologist. An IR can map out your inner vascular system to seek out problem areas.

Interventional Radiologist are recommended by the Hematology department.

Specialized Massage Therapy: Lymphedema
While you're at it, you should also speak to a specialized nurse who is trained with helping to treat "Lymphedema". Your lymph nodes as you mentioned are like mine, chronic and painful. With one or two sessions, you can learn how to massage your lymph nodes properly to "drain" them of the toxic fluids being collected from your body.
http://tinyurl.com/jk9lo2s
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2) Blood Tests:

With all the blood tests they've performed, have any of them tested for mass infections at all? Have you been prescribed any antibiotics? A great deal of the symptoms you mention seem similar to when I have an infection from my leg wounds, etc. The hot/cold sweats honestly sound like your immune system is fighting something serious. A great deal of alternative foods is available to help the body fight off foreign bodies (ex. garlic, honey, green tea, vitamin C, probiotic yogurt).

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3) Livedo Reticularis & Livedoid Vasculitis:

The more I work with professionals in the Thrombosis community, the more I've learned that LV & Blood Clotting go hand in hand. Although most of the LV sufferers here within the Connect community haven't suffered through a blood clot, there seems to be a direct correlation with LV and Thrombosis and potentially a condition which I have called: Factor V Leiden.

Even to this day specialists keep saying they had no idea what LV was and its connection to Thrombosis, and this is coming from the top echelon in the field, so we still have a lot of work to do.

This is why they prescribed Aspirin to you. Aspirin thins out the blood, while also helping with inflammation and pain. In fact, in the past, they prescribed Aspirin to treat Blood Clots. All of which pertain to your case. Haven't seen whether this is a permanent fix, since you're still experiencing the same pain, but it can go a long way to preventing further damage. Please be extra careful when taking Aspirin since taking more than recommended is extremely dangerous. As an example, I'm on blood thinners for life. In fact, I’m on Xarelto, the same pharma that designed Aspirin. If I were to take even one Aspirin, I am in great danger of bleeding internally in the next 12-24 hours. So if you need pain relief and cannot get a prescription, I would take Aleve & Tylenol. Probably not recommended*** BUT, when I'm in dyer pain and I don't have an alternative, those two over-the-counter meds seem to tie me over for a bit. AGAIN, talk to your GP before taking more than necessary, one combination of meds can be ok for some, while others react vastly different.

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Now what does this mean for you?

Well here's where the "health records" come into play. Since Dermatology & Thrombosis teams don't usually work together, you'll have to help them both to do their investigative research together, but separate. I've done this by bringing a full binder to every meeting I go to. This way I can reference tests, diagnosis, and even symptoms I've had in the past. All medicine is just an investigative research. Doctors typically have 10 minutes with each patient and that's it. It's up to us to fill in the blanks on our own (horrible I know, but until it changes, it's up to us).

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Hematology/Oncology:

This is a good step to take. We are now only piecing the two together. There's a HUGE correlation between Cancer and Thrombosis which if your hematologist doesn't tell you about, then ask them asap. I understand these two are probably scary, but if you're anything like me, I would much rather know the "what", so I can concentrate on the "how". Not knowing the "what" is probably the single toughest challenge for patients worldwide.

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Try to Stay Calm:

I can feel your anger, heck, I fully understand it 100%. Years ago, I used to fight my way through each visit. While working with patients who have extreme cases, I try to always remind them to try and stay calm when seeing a specialist. The last thing you want it to be marked as an "unruly patient". My file was once marked in a similar fashion, in fact, I would be tossed around from doctor to doctor because they didn't have the patience to hear me complain about everything. I know it goes against everything in your heart. I find the calmer I am, the more receptive they are to listen to my ideas and to come up with better ideas for the future.

I did a presentation a while back on the "mental aspects of a patient" to professionals in the field, the #1 response I got was: "wow, thank you, I never truly understood how a patient feels about me and how I treat them, I always took it so personally."

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Full Body Scan:

You're going to hear the words, "I don't believe in them", but I wonder if it's time they perform a full body scan on you. I'm a big fan of tests that doctors dislike. Yes, it can find signs that don't relate, but it can also find abnormalities in your body that weren't considered. I found out I have 1 kidney and an abnormal bladder, go figure! What did that mean for me? Well I found out why I have a great deal of problems sleeping on one side and why I’m up all night peeing.

See you never know what's just around the corner. I understand how you feel, how your whole world seems to be looking outward from this dark cave no one seems to be able to find in the woods. If you can find the strength to light a fire in that cave, you'll soon see others who find you as well and the more that you connect with, the less lonely you'll start to feel and the easier it will become to venture out and tackle the daily hardships.

I hope our messages have helped you somewhat. I'm sure some of it is probably not what you needed at all, but I've always said, If I can just learn one thing about myself, that one thing is one more idea I never had before and can help me to discover the next big thing.

Like always, please speak to your doctor before trying something new.
I wish you a lot of happiness and love.

Regards,
Martin. R. Lemieux, Patient Advocate

Hi Martin, Thank you so much for spending the time giving all of us with LV a great synopsis of what is involved to get a good diagnosis for this rare disease. The message you gave is so important ,keep looking for answers and treatments . Right now blood thinning is the treatment of choice for LV, but as you say, we are all presenting with lots of unique problems in addition to LV. I still freak out when I see an ulcer starting but not as badly as I used to and thats progress. Ask my husband:) Most of all, so good to know we are not alone. Zenk

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<br>

@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.