Mixed bag of stuff. Need remedy or support

[Karen Warwick]

My mom has MDS. She has been through a lot in the last 2 years. Originally she had been diagnosed with Lymes Disease 4 years ago. They had mentioned medication ect..then 2 yes later she had another co-infection from lymes disease. No one would test her for a parasite though. The doctor gave meds and tested and told her to stop using lymes as a crutch. She was fatigued often. Brain fog. She got bone marrow biopsied in may 2018. She has a mutated gene. She has MDS diagnosis July. She starts her 1st blood transfusion on last day in july. Started chemo injection in August. Blood transfusions are supposed to help increase her hemoglobin. She should be between 12-17, but she’s a 6. Most she ever increased to was 7.8. So it’s not helping. She gets chemo but it’s too difficult to tell if its helping. She gets blood work drawn every Monday as since last may…her blood cell count is up and down but her hemoglobin is always low, low. Then she had issue with her belly. She was hospitalized for 2 weeks in October 2018 for ascites. They did a paracentesis, drained 6 liters of fluid over weeks time. Liver has hepatitis-non alcohol diseases kind. She is always tired. She’s been having shakes in her hands, restless legs, dry itchy skin. Does anyone else have symptoms and feel like they just cant do anything….when they really want to just get up and do something? My mom has always been a mover. Doing stuff around the house, going places here n there. She’s not herself. Any remedy for suggestion….anyone else suspect lymes as underlying issue?

[mdsfound]

Dear Karen, Thank you for your email with information regarding your mother’s health. I know this is a difficult situation for you and I would recommend that you take her to one of our Centers of Excellence in MDS for a second opinion. She should be very carefully assessed before undergoing any treatment. An MDS expert can then determine the best treatment to help with her quality of life. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. I hope this helps. If you need any additional information, please email me at patientliaison@mds-foundation.org.

• This reply was modified 5 years, 4 months ago by mdsfound.

[Rose Palazzolo]

Karen,
My husband, 75, was diagnosed in June 2018 with MDS. He has had lymes disease for years. He did everything around the house, cooked dinner every night, grocery shopped. I was very lucky. Once he was diagnosed he started injection of “chemo” and after two rounds stopped because his doctor said it wasn’t working. Since then he has no energy, sleeps most of the day. We were scheduled to go to the MDs Excellence Center in Miami and a few days before he asked me to cancel because they won’t help. I can’t force him. So he continues with blood work every Monday, counts keep going down even though he is getting weekly injection of procrit. His platelets are at 20, red blood and HGB are very low. He gets blood transfusions when needed. His hands shake, sometimes he runs a fever, sometime he is freezing. He has constant pain in legs, it moves around some days it’s knees, but most often it’s his shins that feel like shin splints. Of course doctor says he shouldn’t have pain!!! Really then why is he on so many pain pills!!! He says from the waist up he feels great. He wants to do so much and can’t do anything but sit in chair. He basically shuffles when he walks and walking is becoming more difficult. The only place he goes is doctors. It’s hard on him and very hard on me the caregiver. He has also lost 80 POUNDS since June! I crochet and sit and wait and do what I can. I’m sorry I have no answer for you but you’re not alone.😟
Rose

• This reply was modified 5 years, 4 months ago by Rose Palazzolo.

[Nancee Noble]

It helped me to read your post because everyone keeps telling me that the pain in my legs can’t be from the MDS. Whenever my platelets fall below 20 the pain in my legs keeps me from sleeping. I have had pretty good relief from Theraworx relief. I don’t understand how it works but it does. Nothing in it to harm. I want to thank you again for making me feel “not alone” Many prayers for your husband.

[Shelley Frady]

My mom’s oncologist said she would have pain with MDS. He said the pain comes from the marrow working so hard to try to do its job.

[Karen Warwick]

Thank you for responding. Everyday is different for my mom.

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