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• Housecall
• Alzheimer's caregiving
• Living with cancer

• September 16, 2009 4:19 p.m.

  Has anyone out there been tested for the Alzheimers' gene the APOE4? If so, did you feel the test was valid and true? What was the cost and how/where did you have it done?

  - Sandy

• June 13, 2009 2:27 p.m.

  I am 43yrs old and have been watched for CML since my mid 20's. Last tested I was shown to have an extra stalk on chromosone 22 and was told it has not been seen before and unknown cause. I still run high WBC, platelets and occ. neutrophils or eos.'s. I have many chronic diseases now but still don't know about that chrom.22. can you help with info.? thanks.

  - Gloria

• May 27, 2009 8:57 a.m.

  Hi Jessica, Many individuals with genetic diagnoses see a medical geneticist on an annual basis to assist in their routine health care. You could certainly consider making an appointment with a geneticist at the Mayo Clinic who could review your past medical history and schedule any additional specialty appointments to evaluate your symptoms. If interested, please visit: http://www.mayoclinic.org/patientinfo/appointments.html

  - Carrie Zabel, MS, CGC

• May 22, 2009 1:53 p.m.

  I have been dealing with Trichorhinophalangeal Dysplasia since i was a kid. Recently i have been experiencing an increase in medical problems that are unexplained. Most of my tests are normal or only slightly elevated and i'm not sure where to turn next. Someone in my support group on yahoo mentioned the Mayo Clinic and I was hoping for some help. If anyone has any information please let me know at battles_blue@yahoo.com. Thanks Jessica

  - Jessica

• February 23, 2009 2:09 p.m.

  I was conceived by artificial insemination in 1953 and I don't know the paternal side of my genetics. I am interested in having some genetic testing done but don't know where to turn. Is there a reputable genome testing company that you can suggest?

  - In Colorado

• January 16, 2009 3:01 p.m.

  Last year I was diagnosed w/ MIRAS(mitochondrial recesive ataxia syndrome)It's a rare mutation in the mitochondria of the cell Only 8 other people in the world have it. My POLG1 gene is a mutation. I've been through a lot in my life, to much to list. I just want to know what the other 8 w/ MIRAS have been through and are going through. I would like to get to know them. If anyone can help me in finding someone w/ MIRAS, so I don't feel so alone, I would greatly appreciate it.

  - No name given

• January 14, 2009 8:03 p.m.

  Recently I tested for a positive gene mutation for the BRACHA 1. I have decided to have surgery - I am 36. I am having my tubes/ovaries removed but would like advice on hormone therapy. If I take hormones they want to remove my uterus to. What are the advantages/disadvantages of not taking hormone therapy and just removing my tubes/ovaries. Is there a long term effect?

  - Sandra

• January 8, 2009 10:20 a.m.

  I've had Stevens-Johnson Syndrome and suffered for 4 years with reoccurrences. My problem is finding a doctor that understands the results of this allergic reaction and how it can come back in different ways. For example, canker sores for 2 years due to naproxen, drenching sweats from neuronton, major swelling and weight gain from Lyrica, swelling in throat causing spasms and breathing problems, hypersensitivity to everything especially in an active episode. I have had to figure all this out for myself through painful years. When it first happened, I couldn't find much information on it, but now there's a lot more info, if I can tell the multiple doctors what's happening,why want they take the time to research it so I don't have to suffer again. I've certainly paid them enough. I spent Christmas in the ER and they refused to believe I was burning all over my body because I didn't look like the patients in the book. So' of course, they say I'm causing the symptoms myself. I took meds for my nerves because no one knew what was happening to me to make them feel better about my diagnosis! When I started burning on the outside I knnew then what was happening to me. Now I have huge knots in my head where the skin was burned. I know now that my first born had this reaction at the age of 3 to the same antibiotic. My other 2 children are allergic to it too. Now I have a grandson I would like to stop this from happening to him. I know my uncle had the same reaction. Help.

  - vicki SC

• January 4, 2009 7:31 a.m.

  I have a 10 year old daughter. She may be 10 but at times acts like she is 6. She has a few other medical problems like Spinal bifida occulta, right ectopic kidney and liver, bladder to big for her body and wears hearing aids. She does a lot of things that are just out of the ordinary as I do have another daughter the is one year youger than her and is progressing very normal. My older one is also on an (IEP, Individual Educational Program) at school and just overall different. Sometimes I wonder if she is mild downs syndrom due to her eyes. We are going for our first genetic testing in February 2009, does anyone know if downs will show if this is the case. I know nothing of this test and am trying to find more information on this.

  - Christinne (London Ontario)

• December 10, 2008 4:32 p.m.

  Wish there was a way to be informed if our comment is responded to. Can you make that possible? Just realized Bob may never read my comments, sad!

  - LaNavi

• December 10, 2008 4:27 p.m.

  Hey Bob with Charcot Marie Tooth - We too have the CMT gene; lots of variety of deafness too. Do you have any known deafness in your family? How did they diagnose? Muscle biopsy? Ouch!! Our family from Belgium - France unto upper Midwest. I think all people with strange gene are related, so where you from? Thanks LaNavi

  - LaNavi

• December 9, 2008 6:06 p.m.

  My 29 year old son has many serious health problems. Do you know what could cause some of his blood test to look as if he doesn't take his medicines, when he truly does. I hand it to him twice a day myself. Please help me. Thanks

  - Marg

• November 28, 2008 4:05 p.m.

  My mother died from melanoma two years ago at the age of 73. Her sister (only sibling) died in 1976 from melanoma at the age of 43. Her father had cancer died in 1978, and her mother died from a brian tumor when she was only 9 years old. do you think I and my siblings should participate in genetics screening?

  - mary

• November 18, 2008 10:21 a.m.

  Hi I have translocation I found out after having one child (normal) and then in 3 years had 3 miscariages that I carry the gene, then I had one more child (normal) and she is a carrier but my parents wont find out if they are carry it? I hope my daughter wont have to go threw what I did.

  - Sandy

• November 8, 2008 8:51 p.m.

  Hello I am a student in molecular and cellular physiology at the Stanford school of medicine, I am quite curious and interested about the 'miniapoptosis' process introduced few comments ago. Do any happen to know whether preliminary raw data are available that testify its efficiency? Thank you HL

  - Harry Leggett

• October 21, 2008 9:17 a.m.

  I Have lynch disease and can find no information on it.....I was told of this disease last year still I do not have the full understanding of it....

  - Linda Briley

• October 17, 2008 1:42 p.m.

  Several years ago when I was tested at Mayo Clinic, I was told it was due to a genetic problem that I cannot take medications because of bad side effects from almost everything. I have since checked and found that other family members have the same problem. Several doctors have told me that if I don't take their recommended pills, don't come back. At a recent ER visit, even with my blood pressure patch and Nitro, the pressure did not come down. For me, the high blood pressure is normal. The doctors will not accept that, so the real reason for my visit is never checked. They just let me sit for hours until I insist on leaving. How do I convince the medical profession that we humans do not all come in one little mold? My primary doctor. who understands, is semi retired and out of town when most of this occurs. He told me that if I hadn't had a stroke by now (age 86) I wouldn't. Why aren't doctors more informed, or are hey just reluctant to change old habits?

  - Louise

• October 16, 2008 7:55 a.m.

  As a person who has watched family members die from complications of cystic fibrosis, I encourage relatives who plan to have children to be tested -- and to help convince all insurance companies that we need coverage for genetic testing. Testing can tell them if they will need medical help available at birth is the first step in providing a healthier life for the infant. I also encourage them to contact a Mayo site or specialized CF care center, even if it means travel, for the best concentrated help available.

  - Jennie

• October 15, 2008 12:02 a.m.

  Where could my family go for genetic disorder testing? Two daughters live in MN, one in MO and a son in Spokane, where I live. There seem to be numerous genetic health problems that have come down through my side of the family to our children, but no doctor cares enough about our family history to connect the dots. My father never got his wisdom teeth and my younger sister had several teeth that were not there after loosing her baby teeth. One of her sons has the same problem and my granddaughter has the same problem with several permanent teeth missing. My father died of a heart condition at 64, always had a "flushed" appearance. I'm 65, have the "flushed" appearance and WPW and so does one of our daughters, for which we both had surgery. I have MCS, which my sisters had and my children have. I have a mild systemic yeast condition, while my sister and my children, all suffer from quite severe systemic yeast. My older sister died at 64 of a stroke, while my younger sister has a genetic blood disorder, ET with Von Wilderbrand Factor VIII and had a platelet count of about 800,000 before medication and nearly died several times, but had her life saved at MN Mayo clinic. We can't afford the genetic testing, but feel it'd be very beneficial to our family and if we'd had it sooner, could've saved our family hundreds of thousands of dollars in medical bills, with doctors guessing as to a diagnosis. I react adversely to many prescribed meds & Drs. do

  - Evon Forrest

• October 13, 2008 7:02 p.m.

  We are in favor of genetic testing because our son had stage 3 melanoma at age 4. Due to the location of the lesion, it was most likely genetic (not exposed to the sun). However, sun protection is so incredibly important, now that we know he is at a much higher risk for developing this again in his lifetime. As a family we are also big advocates for sun protective clothing as a safety net.

  - Jennie

• October 9, 2008 9:39 a.m.

  Genetics is amazing and I wish I had known more about it years ago. Now, having said that, it IS a problem with insurance companies once you have genetics done and diagnosis. They do not have to cover you if not in a group insurance plan and I was dumped from an insurance company I had (group plan) for 15 years, but they got away with it because they just raised the premium to $1000 per person and we still pay 80% of the bills!! BUT I am also grateful for the information I have so my children (who DO carry the same mutations and are exhibiting illness) can get more help in slowing the illnesses that I never did. I've been sick for 23 years (am 41 now) with severe pain, severe hereditary heart disease, blood clotting problems w/ several pulmonary embolli, lung/breathing problems, asthma, nerve and muscle disease, bone deterioration,severe fluid buildup (can gain and lose 10 pounds in a day!), Hypothyroidism, congestive heart failure, Hypercholesterolemia, and much much more!! We MUST fix our healthcare system so people are able to know their history, get active help and retain insurance no matter what - I never imagined I would be so ill so young. Tried to get disability at 31 and told I was too young for the system to take care of me for so many years to come. I take 25 different meds and have paid out of pocket 1,000's a month (paying on hosp. bills from when my insurance dropped me before getting new one). Don't know the answers,but grateful we have genetics to assist us!

  - Lovinlife22

• October 9, 2008 5:48 a.m.

  I was wondering if I could find out what kind of genetics I inherited from my parents. I was diagnosed with Autism in 2005 and I would like to know if something like this runs in my family. Thank You.

  - Carol

• October 9, 2008 12:23 a.m.

  THE ERYTHROCYTES, FROM NUCLEATED STEM CELLS,BY GENETIC CONTROL, LOSES NUCLEUS, MITOCHONDRIA AND RIBOSOMES AND REMAINS ALIVE AND FUNCTIONAL.I NAME THIS :MINI-APOPTOSIS. THE MINIAPOPTOSIS IS ABSENT IN BIRDS,ECC.IT TAKES PLACE IN MAMMALS AND HUMAN. THE GENES OF MINIAPOPTOSIS FROM THE BLOOD STEM CELLS ARE THE IDEAL GENES FOR CANCER GENE THERAPY, BY TRIGGER THE MINIAPOPTOSIS IN THE CANCER (STEM) CELLS. --POSTER OF IATMO CONFERENCE 2005-VARESE-ITALY

  - GIOVAMBATTISTA ADESSO

• October 8, 2008 6:55 p.m.

  My daughter as symptoms of Huntington's Disease. No one in our history has had this or anything like it other than her paternal grandmother had Parkinson's. Is it better to have a genetic test done or an MRI of her brain?

  - maryann

• October 8, 2008 6:07 p.m.

  This is my first time on this blog. I was wanting to know if there is a genetic test for Alzheimer's? My mother died from it over 4 years ago and my brothers and my daughter and myself are scared to death we are going to get it!!! I don't want my family to go through what I did!

  - Dianne