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med109
Tue Apr 29, 2014, 02:29 PM
My mother in law (MIL) has recently been diagnosed with MDS (with Refractory Cytopenia with Multilineage Dysplasia) She has been having some issues that nobody can figure out so I am hoping someone here may have some advice. We are at our wits end already and it is very early in the game.

She is 78 and was diagnosed from a visit to the ER. She had symptoms consistent with anemia and the Dr. viewed her blood test results for the last year which showed a significant drop in her blood levels, a bone marrow test was done and here we are.

The issue we are having is lower back pain. She is in constant pain but has periods of intense muscle spasms. She says it radiates around to upper abdomen and chest area. They have ran every test in the book (except MRI due to pacemaker) and can't find anything. She has a hiatal hernia that she had surgery for a year ago and it was not successful, and this winter (January) she fell and had a compression fracture of C4 (they said it was a minor fracture). She is on 3 pain killers and still having intense pain at times. This all has resulted in MANY trips to the ER where they end up transfusing her usually as well.

Since they have ran all these tests and can't find anything I can't help but wonder if it has something to do with MDS. She is seeing an oncologist (rarely) and he schedules her for injections but when she gets to the appt. her blood counts aren't far enough below 10 to get the injection. So since she has been diagnosed she has had 4 blood transfusions, and 1 injection. NONE of the many Dr's we have seen act like this is a big deal, or they admit they don't know very much about MDS so they don't even consider it as a possibility.

Any ideas as to why she is having this much pain? She is in the hospital again so I am hoping for ideas to run by the Dr's, since they don't seem to concerned about the MDS.

Thanks for any help you have

Chirley
Tue Apr 29, 2014, 09:24 PM
Have they tested her copper level? Low copper can produce MDS (pseudo) and bone fractures and neuropathic pain and muscle spasms. Copper deficiency can occur after stomach and bowel surgery.

med109
Wed Apr 30, 2014, 03:45 AM
I am not aware of them ever doing a copper test. I will request it in the morning. Thank you!

Chirley
Wed Apr 30, 2014, 04:54 AM
A low vitamin B12 can also cause these problems. Maybe you should ask the doctor to do a nutritional screen due to her previous surgery. Is she on a PPI? These have been implicated in malabsorption of vitamins and minerals too.

med109
Wed Apr 30, 2014, 06:08 AM
Actually she is on a couple PPI's. I will suggest those tests as well. Thanks.