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Dec 11, 2018 · Chronically Ill: Travelling by myself to Mayo Clinic FL first time in Visiting Mayo Clinic

I wonder how many times it takes a patient with a Chronic illness to get a accurate diagnosis? Medical schools need to screen applicants and train medical students to do better by their patients by listening patient's complaints and using their professional knowledge to form a plan of care : Mottled skin, a objective sign of disease and localized or systemic will determine what labs and diagnostic tools to use.
I have come away discouraged with the medical field and think genetic testing should be implemented sooner. I was satisfied with Mayo's Pharmogentics and the doctor that explained the Oneome test results which I did find out I have : Factor V Quebec and thru I was 3% Eastern European Descent Ashkenazi Jew! and probably Quebec "Founders Effects" Rare disease list of Maladies, which I still suffer with untreated with Systemic Livedo Racemosa ( new Dx.) and Scarred Cornea both eyes to Stroma level and Fatty Liver which no doctor will treat any of these issues. I will add a 2013 hard Clavicle lump peach pit size on L. superior located clavicle distal third irregular of cortex that was Xrayed and correlation recommended ? But as usual no one ever followed up?
I am still ill with new symptoms popping up like the blurred vision which was scarred corneas and know I will never be diagnosed until my death. If I had it all over to do again I would of went to Rare Disease Program. Good luck to any new comers to Mayo. Mayo patients can help with emotional support but i would think Mayo would offer RN's or SW for medical advocacy for the chronic ill patient to work on coming to diagnosis and quality of life for the patient.

Oct 5, 2017 · NTM/MAC/MAI: We must advocate for ourselves in MAC & Bronchiectasis

I feel I have always advocated for myself being a former RN but i got more insults about my profession “you know enough to be dangerous” that was from a shrink, You can only be belittled for so many times when you just say “screw it” for some reason Thye do not believe what I am complaining about when it is visible and expressed like green discharge from my R. nipple that the discharge would stick to my bra after a 12 hour shift and itch like crazy ” Don’t bother me unless it is bloody? and that is the same side I had the visible hard non painful axillary enlarged lymph node which I was sent to a “TRAUMA SURGEON” in maine of course and dissection off al nodes “fell apart” so none sent to pathology, i also had cording in axilla, then the totally detached ball socket of my R. shoulder ignored I said something is wrong I feel like the ball is detached, and Dr Manseauu in Ocala who interned in Maine said ” you do not have to tell me anything about the neglect of care in that state. I was kept overnite due to complications from not being treated a lot sooner as he said to my husband she must of been in a lot of pain cause the shoulder was totally detached and the trauma to other areas was extensive. I had a Catecholamine attack and the 4 dissolvable rods that were place in 2012 are still present along with severe cartilage loss and raggedy bicep but he refuses to operate on me again and sent me to UF Shands to see a top Ortho who said I need the surgical reports before I can tell you whether i can do exploratory surgery and maybe fix that bicep, 3 weeks later I got a call and it was quick ” sorry no he will not operate on you” and click goes the phone. then I got the surgical report and was confused at the maybe 15 time outs during the surgery and nothing to say why as usually they do time out to make sure it is right area operated on and then count sponges etc,, but i thought that was excessive. I just hope Mayo will help as they are my last hope as i am having a lot of bloody urine with cloudy foam sludge and odor so bad ? from high urine protein 450 but really higher cause lab test the total volume at 2500cc when actual act was 1400? my lower back is painful and episodes incontince and falling again. . Everything is just getting worse and the oncologist does not seem to be concerned as I guess no protein in blood? well these symptoms are not pleasant and i am bedridden due to the pain of r.shoulder rib cage , middle back and lower back , 60 years old and I told my husband why is god keeping me here haven’t I been thru enough and i have always been the most giving person , I do not understand , I saw Dr Mery Lossata Hospice and Palliative care and hope Mayo will put in Palliative care as I can barely sit up to visit my adult children 15 min and i am back in my bed.

Oct 5, 2017 · Livedoid vasculopathy in Skin Health

I have widespread Lived Reticularis or vasculopathy whichever doctor I see< It was originally diagnosed by “GOOGLE SEARCH” by my Maine MD ” that is what it looks like? I could not believe he did not sent me for a skin biopsy to see if it was Livedo Racemosa? I am al mottled but my face sometimes turns a pasty white my family said “death mask” The only lesions I have had are solitary scalp lesion that did heal for 9 years biopsy “necrotizing Folliculitis” with Staph aureus but the Derm had to finish removing sutures due to pus and pain that shot down inside my head just hustled me out the door ” see a Rheum” My beta2 Glycolprotein was slightly increased he said take baby asa. I am tired of these doctors who do nothing but shove you the door and you have to care for the smelly infection your own. I had 2 primary care doctors in lady lake and Ocala and both needed up sending me to shrinks , I said I will go but all i am going to is complain about the shooty care I have been receiving with no body listening to me. The 1st shrink almost attacked me across from his desk when I mentioned that doctors should confer with other doctors that may have more knowledge as medicine is always evolving ” How so you think we doctors are not trained well enough the medical field” I said that is not what I am saying , I am saying that if you do all these test and everything is negative , then why is bad to team up with others as they may know more knowledge” Then he put me down as a RN and I told I am no longer to work due to my misdiagnosed , botched surgeries in Maine but when I did work I always kept up with knowledge in which ever speciality I worked, like i would not give a drug I did not know what it was for and adverse reactions etc.. nor would I care for a diagnosis I was not familiar with as the hospital I worked had a good medical library and there were nurses more experienced in caring for whatever so I would knowledge myself. He threw me out and said ” i do not want you seeing Dr Cai . I said I already made a change but that was no better as DR Fisher thought I diagnosed my self with MGUS,anemia, skin changes and he had all my records and each time I went to see him he would stand over me rather than sit as he usually did , and argue with me what Moffits told me and what he thought he read. I was right on both things but due to my crying due to my symptoms worsening like blood in urine ” we took a urine sample 2 months ago and it was normal , so he sent me to a shrink DR McDonough in Tavaras 1 hour drive away. I got there and he said ” I do see Hypochrondism here! I see a patient that is visibly ill and none is listening to her complaints” I said DR Fisher thought I was a hypochrondiac and he shook his head yes. He said I will need to see you 1 more time to conform and write my letter. I think doctors like that need to be reevaluated for competency, oh yes the scalp lesion that would never heal a Ocala primary to my surprise diagnosed me as a “PICKER” it is no wonder i get no where with anyone, only sicker and power quality life, I would not treat a animal like I have been treated and insulted by doctors. The solitary lesion was finally dx as SCC and removed the said got it all but within a month a new lesion started next to suture site and again like a crater like everything surrounding lesion is being eaten away, so I do not know what is going on as he mentioned Melanoma and Pre-SCC ?? Never heard of Pre SCC. I know here we go again with a sore scalp

Mar 2, 2017 · Livedoid Vasculopathy or Livedo Reticularis (whole body face white) in Skin Health

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.

Jan 12, 2017 · Livedoid Vasculopathy or Livedo Reticularis (whole body face white) in Skin Health

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

Dec 30, 2016 · Livedoid Vasculopathy or Livedo Reticularis (whole body face white) in Skin Health

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

Oct 18, 2016 · NTM/MAC/MAI: We must advocate for ourselves in MAC & Bronchiectasis

How about getting better doctors that want to care for the sick and use the knowledge and research that is at there hands.

Oct 18, 2016 · Livedoid Vasculopathy or Livedo Reticularis (whole body face white) in Skin Health

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