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Thread: Hi gang, Suzi in Highland Park, IL here...

  1. #1
    Join Date
    Aug 2008
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    Default Hi gang, Suzi in Highland Park, IL here...

    I have finally been diagnosed...thank God! It is a relief to know what has been causing probably most of my health issues since I was a kid. I am 52, been on permanent medical disability for 5 years, for what I was possibly misdiagnosed for: congestive heart failure, C.O.P.D., and fibromyalgia. I had 2 open heart surgeries in '02, one to replace the mitral valve and the other to strip the pericardium from around my heart. I have just recently read that lupus can cause constrictive pericarditis, which is why I had the 2nd surgery. I am sort of angry if this is the case, perhaps the 2nd surgery which came 4 months after the first, may have been not necessary...had I been properly diagnosed with lupus...ah well, I also read that lupus is really difficult to diagnose. I was diagnosed with C.O.P.D. in 2003 and have been using Advair 500 for that. My chest x-rays reveal smaller than normal size lungs, I am wondering if perhaps I have shrinking lung syndrome from the lupus. My pulm said that he thought is was restrictive lung... I was also diagnosed with fibro in 2003, and have had what I call my "sick spells" intermittantly, consisting of nausea, lower g.i. issues, aches and pains, low grade fever. I picked up an upper respiratory infection in Feb, and ended up in the hosp for 4 days, having much difficulty breathing etc. Then did pulmonary rehab course, and ended up needing oxygen while exercising. Now I have home oxygen which I use most of the time. Have been having one of my "sick spells" for about 6 weeks: started out with headaches, then my upper arms started breaking out! Never had that before. So all in all been feeling everywhere between moderately crummy to extremely ill. Did the round of Doc's the past few weeks, finally the pulm. did blood work and b.i.n.g.o. Today I started back on Prednisone, have appt to see top dog rheumy next Tuesday. The only concern I really have at the moment is that I have been having a burning/itchy feeling to my skin, and I've read that this can be a sign of kidney problems or damage. Why not, the heart and lungs are already shot haha!!! Have also had a few achey pains in the spleen area. So I am blathering on, very happy to be here and will see you all around! Take care!

  2. #2
    Join Date
    Nov 2001
    Victorville, California
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    Hi Suzi :lol:
    We are getting a nice collection of "Susie's" here..all with variations of spellings. You are most welcome to our family where many of us have gone through the mis-diagnosis phase (some to the point of being critically ill by the time they were correctly diagnosed).
    You are right, Lupus can cause Pericarditis as well as Pulmonary Hypertension. However, there are many different types of rashes with Lupus with almost an equal amount of different causes. Most of the Lupus rashes are sun sensitive and worsen (or appear) after sun exposure. The skin is involved in more than 90% of people with lupus. There is the classic lupus rash which is a redness on the cheeks and over the nose (malar blush) often brought on by sun exposure (aka: Acute Cutaneous Lupus Erythematosus). Then, there is Discoid lupus with the red skin patches on the skin and scaliness that can lead to scarring. This rash usually occurs on the face and scalp and can lead to loss of scalp hair (alopecia).
    Then there is Subacute Cutaneous Lupus Erythematosus lesions. This rash usually occurs after sun exposure, the lesions are usually itchy. It may involve any place on the body, and because the lesions may be on the palms of the hands and the soles of feet, they resemble a drug reaction.
    Chronic Cutaneous Lupus Erythematosus, referred as Discoid Lupus Erythematosus, usually involves the face, scalp and ears, but it may occur anywhere. This rash may also be itchy and red. The rash may have slightly elevated plaques, that in time become raised and bright red, later on the center becomes depressed, the color fades and becomes atrophic (wasting away).
    Lupus Panniculitis, appears as deep nodules. The lesion is situated below the skin in the subcutaneous tissue, and heals with a deep atrophy of the involved area.
    Bullous Lupus Erythematosus is characterized by the presence of blisters which contain a clear seurous fluid, and may range from 3 to 40mm in diameter. The rash usually appears in sun exposed areas, and only rarely is associated with burning sensation, mild pruritus or redness.
    There is a relationship between kidney problems and skin rash. Hyperphosphatemia (elevated phosphate in the blood) can occur, most commonly from kidney dysfunction. Phosphate is eliminated from the
    body through the kidneys, and if they are not functioning properly,
    phosphate will accumulate in the body. Most of the time,
    hyperphosphatemia is asymptomatic, however, it can cause various
    symptoms including 1) muscle cramps, 2) tetany ( involuntary contraction of muscles), and 3) perioral numbness or tingling (occurring in, or being the tissues around the mouth), 4) bone and joint pain, 5) pruritus (itchy), or 6) skin rashes. Most of the symptoms of hyperphosphatemia (1-4) result from hypocalcemia (elevated levels of phosphate lead to low levels of calcium in the body). Other symptoms (5-6) may exist on their own, or
    may be exacerbated by other compounds that are not eliminated from the
    body due to kidney dysfunction.
    I hope that this information has been helpful to you. Please let us know if you need anything further.

    Peace and Blessings
    Look For The Good and Praise It!

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