[lindajo]

The doctor prescribed Tramadol 50mg tablet. Have any of you had experience with it?

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There is new research showing Omega 3 fatty acids. (Fish oil basis) is effective in making the telemores longer on the chromosone that are too short. It helps the body repair itself.

One of the major networks put on a story this week. I will post it if I can find the link

[lindajo]

Pam You do deserve a party. You have had 20 years of Bone Marrow Failure diagnosis. One year past transplant. Congrats! You are an inspiration to me and many others!

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RCMD is Refractory Cytopenia with Multi-lineage Dysplasia. Under the World Health Organization Classification System.

The doctors really don’t understand why I don’t need more transfusions either.If I get a flu virus or infection my counts dive and I need a transfusion.

I had a top of the line disability policy when I got sick. I have not been able to increase my activity level in order to work any kind of regular schedule. My disability policy makes sure I don’t have to work in order to eat. Having the ability to rest whenever I need to has enabled me to manage the disease. Most people are not that lucky.

[lindajo]

Oh my gosh the icon actually appeared. I don’t even know how I did that.

[lindajo]

Kenneth, I was diagnosed on my 30th birthday. Today I made it to 19 years of survival. I am honestly healthier at 49 than I was at 30. I was transfusion dependent the first two years but they have been infrequent since then.

Get on a healthy diet and don’t forget to treat other health conditions. I still needed sinus surgery, a hysterectomy and an appendenctomy. In order to keep my MDS under control, I had to aggressively treat other health problems

Procrit did not work for me. B-12 shots every two weeks have really helped. What helped the most was watching my diet and making lifesytle choices to eliminate stress. Don’t ever think that you cannot make positive choices that will help you fight the MDS. Eat right, sleep enough and eliminate toxic habits and if necessary toxic people in your life. You do have power to fight the monster yourself. Stay positive.

[lindajo]

Dear Arian and Gary, Don’t feel guilty about not helping your Mom more. She knew that you loved her. She will be honored by your new dedication to educating others about the disease.

Pnemonia can sneek up on anyone at any age. She did her best and fought as hard as she could. She was often an inspiration to others. Remember her and be proud of her for that. We will remember her here.

[lindajo]

Paige, Usually once or twice a year I get a swollen spleen and or liver. Generally constipation goes along with it.

What has worked for me to resolve it has been more fiber, broad spectrum antibiotics followed by yogurt and live probiotic cultures.

The Probiotic I currently use is Pearls available at Wal-mart.

I also get more strict with my diet. No fried foods, no lactose. I eat more steamed or grilled vegetables and foods that are more easily digested.

I hope that your Mom’s colonoscopy and CT turns out o.k. It can be scary waiting for results. Let us know.

[lindajo]

Levels are slightly different for men than women. They also move a decimal point on counts from Canada. I recommend that you get a copy of your blood counts and next to the levels should be what is normal or considered normal.

Keep track of how fatigued your husband feels at that level. I rank myself from excellent, good, fair or poor. Also make a note of other symptoms such as cold, flu viruses, stomach or pain problems. If you keep score yourself you will get an idea or when a transfusion might be needed.

Only your husband can tell the doctor how he feels. The doctor will make a recommendation dependent on what the patient tells him or her.

[lindajo]

It is extrememly rare to have familial mds. I have only seen one article about it in 19 years. I don’t believe I have it readily available. I will look for it. Check with NIH (National Institutes of Health) and search for the article. I am sure that is where I found it initially. Linda

[lindajo]

Hi Your case sounds like mine. I was diagnosed at age 30. Whenenver I have stress emotional or illness my blood counts drop. Mine looks like MDS but they say it isn’t because I am still alive and fairly stable after 19 years. Unfortunately they don’t know what else to call mine either. I have been evaulated at Barnes in St.Louis, Memorial Sloan Kettering in Rochester Ny and the Cleveland Clinic in Cleveland Ohio.

Procrit didn’t work for me. B-12 shots every other weeks and vitamins B-Complex, Folic Acid in amounts similiar to pregnancy vitamins help my counts to be more stable. You might keep taking them after pregnancy.

I would also recommend cutting back at work. Two kids and bad marrow is enough. I had one daughter prior to diagnosis had a difficult preganancy and decided never to get pregnant again. I believe the one thing that has helped me the most is my disability policy has enabled me not to work except for being a Mom. I was able to rest and take care of myself when needed. Is that an option for you? It took two years for me to qualify for Social Security disability but then they made it retroactive and paid me for the first two years. Hang in there.

[lindajo]

Thank you for responding. Linda

[lindajo]

Blood counts are always only part of the story. There are many other factors considered before recommending a transplant. Her other health considerations, chromosonal changes and genetic studies generally factor in.

Most doctors welcome second opinions to cover themselves on liability if for no other reason. Get a second opinion before progressing.

Many times my local hematologist would "recommend" a transplant in order to get me to go to a center of excellence for a more complete evaluation. Often they don’t have the ability to due all of the tests at a local hospital.

I have been evaluated at three different Centers of excellence and turned down for transplant every time. My local hematologists(plural) learned something new that helped us monitor and control the disease every time I went. At 39 she is one of the new patient age categories. In the early 1990s there were no women or really anyone under age 50 given the diagnosis. Now there are many women and even children given the diagnosis. Categories are being expanded and changed all the time. Currently their are two classification systems. FAB is the French American British system and the WHO world health Organization system. Has she received a classification yet?

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Jeff, I have been watching and waiting to get worse since 1991. That is right 18 years. I have not been able to work full time but I was still able to be a Mom. My daughter was 7 when I was diagnosed. She is now married with a son of her own.

Worry won’t make you better. It won’t help your family either.Make sure to get an opinion from a center of excellence and get a good hematologist you can work with locally. There are many options now for treatment but don’t be afraid of watching and waiting. Yes it still really hard to be sick so much but it is possible to manage your disease.

[lindajo]

I recommend getting a copy of all blood counts. You will learn more over time and being able to refer back to your counts while learning will help it make sense.

Keep a copy of all other test results, ask for transcribed results and doctors notes. Doctors retire die and move it will help you figure out what tests you have and haven’t had.

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