FAQ - Amyloidosis
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I have a question about a disease called Amyloidosis. My mom died from this disease over 10 years ago.?


I have been doing some research on line about it, and I found out that there is more than 1 type of this, and I have no clue what kind my mom had, and I want to know if I am at risk. The doctor said that it is very rare, and there is no cure. If there are any doctors or nurses here, I would appreciate any help you can offer. Thanks in advance!
I guess I need to mention that the doctor who diagnosed her took a biopsy from her liver? Sorry I left that out. Thanks!
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There are quite a few differenct types of amyloidosis, but the vast majority of them are not inherited. They are mostly quite rare, and many have no cure, so it doesn't narrow it down really.

Amyloidosis is caused by abnormal proteins. Proteins are like bits of string that fold up into 3D shapes - each different type of protein has its own distinctive shape. In amyloidosis, a protein loses its normal shape and takes on an abnormal form that builds up and causes damage in the body. What kind of amyloidosis a person has depends on what specific protein is involved.

Alzheimer's disease is the most common type of amyloidosis, though this probably isn't what affected your Mom, because it's usually just called 'Alzheimer's disease', not an amyloidosis. Another well-known one is light chain amyloidosis (sometimes called primary amyloidosis)- this is caused by a protein that is part of antibodies. It can happen when someone has a blood cell disorder like lymphoma or myeloma, or it can happen by itself. It tends to affect the kidneys and the heart. Another one is 'A amyloidosis' (sometimes called secondary amyloidosis)- this tends to occur when someone has some kind of chronic inflammation going on. It tends to affect the heart, liver and spleen. Then there are the less common ones like lysozyme and transthyretin amyloidosis, which can rarely be inherited.

Your best option is to try and speak to someone involved in your mother's care, or to see if you can access her medical record or death certificate. You could also speak to other people in your family to see if anyone else has had the same condition - the hereditary ones tend to have a very strong family history. The problem with amyloidoses is that unless you are medically trained, many of them seem to have quite similar symptoms (e.g. heart and kidney problems), so it's quite difficult to work out which one it might have been.

This site has some good info:
http://www.emedicine.com/med/topic3377.htm



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Are there any blood vessels in the lungs that could burst and fill your lungs with blood?


I have something called nodual amyloidosis which are calcium deposits about the size of quarters in my lungs. Sometimes they rub against blood vessels and the vessels break causing me to cough blood. I just wonder if there are any vessels large enough that could fill my lungs with blood if broken. I've been getting treated for it for about 10 years, but have never thought to ask my docs because it hasn't been a large amount until recently. I'm going to call the Dr. but I thought that someone here might know. Thanks
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There are many blood vessels in the lungs, but if they burst, they seal up immediately because they are so small. You will be fine, but you should still see a doctor because a doctor will know more than me.  (+ info)

Can anyone help put my mind at rest before i work myself up into a complete state?


I've been feeling ill a lot lately with seemingly random symptoms such as intermittent diarheora, palpitations and chest pains, numbness in my limbs and a habit of falling over (without feeling dizzy or passing out). Also my blood pressure is suddenly very low, every time it has been checked it's been too low, it never used to be. My father died 6 years ago of a rare disease called Amyloidosis, he also had low blood pressure and chest pains and i watched him die slowly and painfully over two years. I've had lots of tests including an MRI but have to wait weeks for the results, meanwhile i'm driving myself mad with what ifs, i'm a very positive person normally and tend to worry about things if and when they happen but this has got me worried as i don't know of anything else these symptons could be attributed to. If anyone does, i'd love to know to help put my mind at rest
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Karen, please ignore all the prospective 'diagnoses' that you've received here.

What you really need to do is consult with your own doctor. Mention to him/her the symptoms that you've been getting and see what s/he suggests.

I'm sure you're well aware that one type of amyloidosis is familial (passed down), so I won't go on about it.

What I would advise, is that you read all you can find about the condition. Although what I've read doesn't make comfortable reading, I think it pays to know, in advance, what could happen, what treatments are available, etc.

See the following links for a starting point. (The third url gives quite a good description of the condition, and it's not too long to get through.)

I wish you the very best of luck with whatever is found from any tests that you have done.

If you wish for a bit of moral support on a one-to-one basis, please don't hesitate to contact me via email.  (+ info)

Help! Medicare expert needed! Is coverage available for in-home health care?


I realize how convoluted this can all be. I've been in touch with several doctors, nurses, health-care agencies, and a Medicare rep. All I can say is the information I've obtained has been sketchy at best. Mom is in final stages of cancer and a related rare disease called amyloidosis. She requires full-time care now, and we've hired sitters to help us, but we can't do this for any length of time. She's not currently under hospice, although she certainly qualifies for that. Thank God pain management has not been an issue, but having people who can help take of her now that she is becoming totally bedfast is a major issue. Does anyone know who we can contact that might have some answers and help us wade through all this mess???????? If any of you have had any experience with home health care and Medicare, I would certainly welcome your input as well. Thank you!
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Hospice will be able to offer her more services at this stage in a week than the home health I believe. Call the Home Health agency though your doctor uses for most of his patients and see if she would qualify for how many visits a week? some to bathe her, sometimes they will even send someone to help clean, you just need to call. Then call the Hospice and compare servcies.
Medicare covers home health and hospice services if they qualify.  (+ info)

Could anyone tell me what health condition this is? URGENT?


My friend has some health problems but her parents won't tell her what it is. All I know is that she might need to take out a kidney, that she coughs up blood (hemoptysis), has stomach and throat pains and is losing weight. I've looked up some stuff but still not sure what it is. Can anyone tell me? I found Lupus, Tuberculosis, Wegener's Granulomatosis, Goodpasture's Syndrome and heredity amyloidosis. Thanks
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There is no way for anyone to tell you what it is without any diagnostic tools, ie x rays, blood tests, and examination. Besides what you have found yourself there are probably over 1000 differential diagnosis for the symptoms that you wrote. I would suggest that she have a serious conversation with her parents about what's going on as she has a right to know. How old is she? She should be able to ask her doctor what is going on so that she can deal with it. I would tell her parents that she is really stressed out not knowing and that it is worse than knowing could ever be.  (+ info)

how to treat swollen tongue?


I have been dignosed with amyloidosis, and my tongue is to big for my mouth
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Wow iv'e never heard of that before.
Why don't you ask a doctor, I doubt a lot of people on YAHOO answers would even know the answer to that o_o
if its swollen, drink stuff without any coldness or heat, bercause then they will burn your tongue. No strange flavours. No sour Candy. NO SUGAR.
ONLY HEALTHY STUFF.
And go to a clinic, theyll tell you 5 minute advice on what medicine you need~~
hope that helps. its common sense though
tee hee. :)  (+ info)

first hand disease?


I would like to know more about amyloidosis, i am doing a project on it and am hoping that someone could tell me FIRST HAND some information on it. If this is not possible, at least to be able to sum it up for me and tell me about the disease, the more information the better.

**Even if you know someone with amyloidosis, this would be very helpful to tell me what they go thru, what they have, and stuff like that.
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The deposition of amyloid, an abnormal protein, in many organ systems (eg. liver, kidney, heart), causes these systems to fail over time.and is known as chronic amyloidosis.

Another amyloid class causes alzheimers.  (+ info)

Mulitple Myeloma question?


My dad was diagnosed about 3 months ago and started chemo last friday, but now he was admited in the hospital again with heart problems and apparantley it is something called amyloidosis - so my question is, is this a whole other disease or a "side effect" of the multiple myeloma?
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Amyloid and myeloma can be very confusing. Myeloma can exist by itself, and amyoloid can exist alone. Or, you can have them together, or one can look like the other, and the docs have a hard time telling what they are really dealing with and how to treat it.

There is no one single test that will give a definite answer. There is a battery of exams, scans and biopsies to be done. A lot depends on the interpretation and experience of the physician and the institution. This is one case in which getting second and third opinions is an extremely good idea.

Boston University has an excellent amyloid program. It would be well worth your time to talk to them. Also Mayo Clinic in New York. (No, I don't work for either of them, but my transplant program does refer tough cases to them)  (+ info)

Connective tissue disorders?????????????????


Can anyone give me a website with a list of all the 200 types of connective tissue disorders not just scleroderma, lupus, amyloidosis, polymytosis or dermatyosis.
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Dieticians - Internists - Is kwashiorkor a possible symptom of our poor diet - too much white flour / corn syr?


I think many Americans are starving themselves because of their daily reliance on white flour for sustenance, whether rich or poor. Does white flour inhibit good digestion of other more protein rich foods? (Look at all the protruding bellies.) I'm looking at something that indicated that in a report as follows:

"Conditions listing Kwashiorkor as a symptom may also be potential underlying causes of Kwashiorkor. Our database lists the following as having Kwashiorkor as a symptom of that condition:
Alcoholism
Amphetamine abuse
Amyloidosis AL
Anorexia Nervosa
Blind loop syndrome
Boyd-Stearns syndrome
Brinton disease
Classic galactosemia
Cocaine fetopathy
Congenital short bowel
Congenital sucrose-isomaltose malabsorption
Cutaneous photosensitivity colitis, lethal
Cystic Fibrosis
Epidermolysis bullosa, junctional
Finnish nephrosis syndrome
Follicular hamartoma - alopecia - cystic fibrosis
Gastrointestinal amyloidosis
Hereditary amyloidosis
Hyperemesis Gravidarum
Intestinal epithelial dysplasia
Intractable diarrhea with enterocytes assembly abnormalities, congenital, familial
Juvenile tropical pancreatitis syndrome
Microsporidiosis
Obal syndrome
Opisthorchiasis
Pancreatic insufficiency
Pancreatic Islet Cell Cancer
Patau syndrome
Sandifer syndrome
Self Harm
Short Bowel Syndrome
TopDrug interactions causing Kwashiorkor:
When combined, certain drugs, medications, substances or toxins may react causing Kwashiorkor as a symptom.
The list below is incomplete and various other drugs or substances may cause your symptoms. Always advise your doctor of any medications or treatments you are using, including prescription, over-the-counter, supplements, herbal or alternative treatments.
Chloramphenicol and Acetaminophen interaction
more interactions...»
Read more about medication causes of Kwashiorkor
TopMedical news summaries relating to Kwashiorkor:
The following medical news items are relevant to causes of Kwashiorkor:
Celiac disease more common than thought
Commonly confused celiac disease
Hyperemesis symptoms similar to morning sickness
Operation options for obesity
Prevention of osteoporosis in cystic fibrosis
TopRelated information on causes of Kwashiorkor:
As with all medical conditions, there may be many causal factors. Further relevant information on causes of Kwashiorkor may be found in:
Risk factors for Kwashiorkor
Hidden causes of Kwashiorkor
TopCauses of Kwashiorkor: Online Medical Books
16 MEDICAL BOOKS ONLINE! Review excerpts from medical books online, free, without registration, for more information about the causes of Kwashiorkor.
Protein-calorie malnutrition: Causes and incidence
(Professional Guide to Diseases (Eighth Edition))
Both kwashiorkor (edematous PCM) and marasmus (nonedematous PCM) are common in underdeveloped countries and in areas in which dietary amino acid
content is insufficient to satisfy growth requirements. Kwashiorkor typically occurs at about age 1, after infants are weaned from breast milk to a protein-deficient diet of starchy gruels or sugar water, but it can develop at any time during the formative years. Marasmus affects infants ages 6 to 18 months as a result of breast-feeding failure, or a debilitating condition such as chronic diarrhea.
In industrialized countries, PCM may occur secondary to chronic metabolic disease that decreases protein and calorie intake or absorption, or trauma that increases protein and calorie requirements. In the United States, PCM is estimated to occur to some extent in 50% of elderly people in nursing homes. Those who aren’t allowed anything by mouth for an extended period are at high risk of developing PCM. Conditions that increase protein-calorie requirements include severe burns and injuries, systemic infections, and cancer (accounts for the largest group of hospitalized patients with PCM). Conditions that cause defective utilization of nutrients include malabsorption syndrome, short-bowel syndrome, and Crohn’s disease.
Protein-calorie malnutrition: Causes
(Handbook of Diseases)
Both marasmus (nonedematous protein-calorie malnutrition) and kwashiorkor (edematous protein-calorie malnutrition) are common in underdeveloped countries and in areas where dietary amino acid content is insufficient to satisfy growth requirements. Kwashiorkor typically occurs at about age 1, after infants are weaned from breast milk to a protein-deficient diet of starchy gruels or sugar water, but it can develop at any time during the formative years. Marasmus affects infants ages 6 to 18 months as a result of breast-feeding failure or a debilitating condition such as chronic diarrhea.
In industrialized countries, protein-calorie malnutrition may occur secondary to chronic metabolic disease that decreases protein and calorie intake or absorption or trauma that increases protein a
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Interesting read and yes, you have a valid point there.
I believe when manufactures add or take products out to produce a longer shelf life, we become unwittingly victims.
I also will state that man's desire to consume these products in large quantities also makes a statement to how well they care about their own bodies and therefore allowing them to become the blimps, encourage laziness and less outgoing as a person.
I find these chemicals are foreign to the human body and instead of helping ones digestion, actually does the opposite. It promotes build up and therefore a blockage to the body operating normally.
There is where the many problems of the body lies in wait for us. Some times quicker then we ever could realize.
It is sad that many of these traits are passed on during breast feeding and actual Development inside a mother's womb. However i wonder if this wasn't all a design by human engineering to cause a decrease in the human population or is it just a consequence of a "on Demand" society.
I learned a lot about nutritional values when i searched out about diets for myself. There are some products now that i will never eat again
Great question and deserving my further attention as well as others.  (+ info)

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