Information would be Appreciated

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• October 1, 2006 at 10:14 pm #15296
  Cathie Rouse

  Member

  I am requesting some information. My Mother who is deceased, had MDS, diagnosed in late 1990’s, she had 2 cerebral hemorrhages (first at age 54), the later causing her death at age 60. She had a very hard illness. My Grandmother died in the early 1980’s from cerebral hemorrhage after a long illness of leukemia. I discovered this after my Mother’s death going through boxes. Both were smokers, something I have never been.

  I am a 53 year old female who was just diagnosed with Microcytic Anemia due to some underlying disease,diet has been ruled out, which we are currently investigating. I have been having all of the normal anemia symptoms except weight loss; my blood labs support it, low hemoglobin, hematocrit, MCV, MCH, ferritin. I recall my Mother had the same and did not lose weight,or was bloated? My Doctor is ruling out MDS, at this time, saying I would be losing weight? We are doing a colonoscopy in a week and scoping upper intestines, as we search for the underlying condition. My gut feeling is I may have MDS. I watched my Mom suffer for years and all of my symptoms are exactly like hers. Further, I grew up on a ranch and worked in a veterinary clinic for 12 years, I was exposed to x-ray radiation daily and extreme exposure to high doses of large animal insecticides.

  Could there be some weight to my thinking I may have early symptoms of MDS? From my reading heredity is not a crucial factor? Of course the exposure could be?

  I would appreciate any feedback.

  October 1, 2006 at 10:21 pm #15297
  JaniceR

  Member

  Hi Cathie:
  My father has MDS and hasn’t lost any weight. He was also exposed to many chemicals. I think that is a factor. I heard the chromosome 7 abnormality runs in families (?) and my grandmother also had a blood disorder. I’m not much help since we are new here too (January 2006).

  October 1, 2006 at 10:27 pm #15298
  Cathie Rouse

  Member

  Thank you for your reply. It is so nice to have this board. What I would have given to have this when my Mom went through this.

  Anyway, I appreciate all the feedback I can get right now. I just want to know and this wait drives you crazy.

  October 1, 2006 at 10:58 pm #15299
  Suzanne

  Member

  As far as I know the only way to definitely diagnose or rule out MDS is with a bone marrow biopsy.I did not lose weight with either MDS or AML-Only when they stopped feeding me as part of my chemo treatment. If possible go to a center of excellence for a consultation or at least go to a hemo with lots of experience with MDS. If it can definitely be ruled out that will be one less thing for you to worry about.

  October 1, 2006 at 11:43 pm #15300
  Neil

  Member

  Hi Cathie,
  As Suzanne indicated in her post, the only way to confirm a MDS diagnosis (DX)is with a bone marrow biopsy.
  Would also suggest you contact a hematologist experienced in treating MDS till they determine an exact DX. It takes an experienced doc to provide you with all of the options in the event of an MDS DX.
  Would also point out that there have been recent advances in MDS treatments that cam provide a much better prognosis than those from the 1980’s and 1990’s

  October 2, 2006 at 12:12 am #15301
  patti

  Member

  Hi Cathie,

  I here you on that waiting thing! I hate waiting for test results, appts. to happen, etc. It’s enough to drive one nuts.

  My MIL has not lost any weight with her MDS. I think it’s important too that you hit on the chemical exposure. Even though you don’t have an diagnosis there is so much you can do naturally to help your body with whatever it’s fighting. I would encourage you do some research into the natural realm because it will only benefit you, regardless of what disease you’re dealing with. The first thing that comes to mind is juicing. There have been a number of discussions on this board that you can search out that talk about its benefits, juicers, etc.

  It wasn’t until recently that we made a connection between my FIL’s previous illnesses and my MIL’s. My FIL had NH Lymphoma (NHL) in his 50’s and my MIL has MDS. We were wondering if it was caused by living in the house they did and being exposed to radon and other chemicals in a 200yr old historical home. I can see why you are drawing lines between family members and yourself. It’s hard not to with all the waiting.

  Take care and keep us posted.

  Patti

  October 2, 2006 at 1:40 am #15302
  Jimbob

  Member

  Cathie,
  I did not lose any weight until they after they started the chemo. Not everyone gets all of the symptoms. But until you are dx’d by an expert after having a bone marrow biospy, you will not knwo what may be the root of the anemia. As Neil said, many improvements in thelast 20 years, heck even the last 2-3 years.
  Jim

  October 2, 2006 at 1:41 am #15303
  Jimbob

  Member

  Cathie,
  I did not lose any weight until they after they started the chemo. Not everyone gets all of the symptoms. But until you are dx’d by an expert after having a bone marrow biospy, you will not knwo what may be the root of the anemia. As Neil said, many improvements in thelast 20 years, heck even the last 2-3 years.
  Jim

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