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Looking for Someone to Blame

I was diagnosed with H-pylori in Mar 2015. I was put in an antibiotic regime tha killed the virus. In 2016 I started having stomach pain than in May 2016 I started with back pain and could not bend. My doctor gave me pills and in 2017 send me to physical therapy. It was the worst pain i ever suffered. In October 2017 I was finally put in a MRI and the results were Multiple Myeloma. Never heard of it until that day. I had multiple fractures in my back and a tumor in my lower lumber. Surgery to remove tumor and fix my back was successful. I went through radiation and chemo and went good as well. I always thought my primary doctor was at fault or my past lifestyle came back to haunt me. Six months later I am back at work with little or no pain. I am on Revlamid, Ninlaro, and dexamethasone. I was once fully undetectable but it spiked back up to 29Ul. Today i am at .09ul that is below normal. My goal is to be fully and complete remission. Ninlaro replaced velcade cuz i was getting neuropathy. I get bloodwork twice a month and i am extremely grateful that I can do my normal life. I do not drink or smoke. My kidneys are fully functional and by the way I am only 49 years old. I call myself the multiplemyelomawarrior and live everyday to the fullest.

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  • mary
    1 year ago

    Sounds like how I feel, my Dr misdiagnosed me,I was in extreme pain, she diagnosed me with cochontritis. She said it was pain from having broncitis. After 2 months of crying leaving work every night, I went to the er saying ok something is just not right I’m not leaving until you figure it out,I also was at the er before that with pain too.I found out in the er I was in kidney failure from the ibprofin she was pumping in me and I had 6 fracture ,also myeloma in my spine ribs vertibreas sternum and femour.needless to say I was not happy with my dr about this.2 vertibreas did not il be seeing the spine Dr for surgery.I cannot do my job that I’ve been doing for 11 years because of the fractures and I’m a oncologist said I’m in remission by numbers but I still have a active spot in my femour but my numbers are going down there. My igg was 4000 it’s 400 now alittle low actually.I’m starting on my maintence in 2 weeks .my kidneys bounced back after one iv I was lucky there.I’m glad to here they fixed your back.I’m worried about that as I haven’t been able to do much.I agree it’s the worst pain I have ever had . I wond up with 8 fractures total .started bone treatment 4 months ago haven’t fractured’s so hard because we get in remission but have this mess of fractures to deal with .as I was trying not to blame my Dr,I feel like going there in tears hardly being able to get up then going back the next day the same way that Dr should had done more. Being nursing staff I was fracturing at work helping people up.I think if I had know , I would had been in treatment and not lifting to get was like oh why are you back today thing. She dismissed oncologist was saying to get the stem cell transplant because it keeps you in remission longer.did your Dr tell you that? I’m on the revlamid my maintence treatment starts in a couple weeks and it’s the revlamid daily for 2 weeks off a week.but the velcade only twice a’s almost like just staying on the regular treatment.she my oncologist thinks I’ve had this a long time going from MGUS to smoldering to be thrilled if they can fix my back my fractures are in the thoratic area.and I have leasons all is your exhaustion level at this point?

  • MyelomaTeacher
    1 year ago

    I too was diagnosed with multiple myeloma at age 49 after receiving physical therapy and pain medication for what was wrongly attributed to degenerative disc disease for almost 2 years. I had multiple compression fractures in my back and loss 3 1/2 inches in height. Once correctly diagnosed my life finally got back on track. Myeloma may be off the doctor’s radar when seeing a younger patient. That’s why each year during March which in Myeloma Action Month the International Myeloma Foundation encourages a letter writing campaign to all PCP’s and internist to help put myeloma back on the radar when formulating a differential diagnosis. Here is a link to that letter.

    I am glad to hear you are doing well and wish you continued good health. In July I will be living with myeloma or 10 years and thankfully I am still do well too.

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