Jasonavalentine Member Posts: 3 Member
edited June 2023 in Multiple Myeloma #1

Hello everyone! I’m Jason [Content removed by CSN Support Team] nice to share my story with you. So I’ve been reaching out more as a means to hopefully be over this episode that has drastically changed most of my life. I’m 48, never or rarely sick, never even been to a hospital until this. Perfect health most my life until I had a pain in my back that just wouldn’t go away. After much trial and an MRI a tumor was found on my spine that was affecting nerves in my bladder and legs predominantly. Thankfully my urinary retention has mostly subsided but still have burping and some challenges to pee but far far better than the self catheder. Took me 30 times to not do so without crying. But I got through that. So much pain and episodes it’s too much to get into but presently I’m on pill chemo Revlamid and A weekly shot as well as another pill I can’t recall. I just take what the dr says. My biggest challenge right now is my walking is very challenging. I wake up so stiff if I even sit for 10 min. Sleeping is usually horrendous i get so stiff it takes all the energy I have to just budge my legs let alone get up and walk w a walker to the bathroom which is very shaky. I feel I can fall most the time. I try not to use the wheelchair as I have feeling in my legs and can move all the muscles, but feels like my legs are full of cement, massive tingling, burning and I just can’t seem to get any improvement thus far. I also had excruciating back pain likely the meloma cells in my spine which thankfully have subsided. What’s odd is if the chemo has subsided the back pain, why hasn’t my legs been able to recoup? Possibly the nerves were damaged from surgery yet I was walking with no walker or cane and improving until I started having the back pain that completely disabled me. Now that the back pain is virtually gone my walking is rough to almost wheelchair bound. I feel I should push forward tho and get some muscle mass so I ignore the wheelchair. I don’t know what anyone can help as we all likely have different issues. I just pray I can walk again so if you wouldn’t mind praying for me as well as my family. It’s been pretty much relentless hell during most of this. The last pics with the circles is the latest MRI taken in ER from my back pain which shows I believe multiple tumors. Since the back pain has virtually gone tho I have to believe the tumors have shrunk or lessened. Yet, I can’t walk very well and doesn’t seem to be getting better. Maybe in time. I’ve been out of work since September and all my savings are gone. No financial assistance whatsoever so it’s been difficult and relying on Family. Hoping for Social Security disability but no help yet. Any help or information is appreciated. I’d be happy to connect with anyone as well even to talk on the phone. Take care everyone!


  • nubie03
    nubie03 Member Posts: 4 Member

    Jason everyones battle is different. I hope something from my journey will encourage you. I am a 51 male, Mike. I was diagnosed in Dec 2022. i had alot of back and hip, leg pain. I had 2 weeks of radiation on my back and pelvis. I am on a Valcade, Dex, and Revlamid. About 2 months age i had 2 surgeries. I had a rod but on my right femur and my left hip had some reinforcement due to the damage from the MM. Surgeries were about 2 weeks apart. If was extremely difficult to get around, i was using a walker for a while. But slowly with treatment and some pain management i have been feeling better. I went from walker to cane, to now rarely using my cane. I have found the am i mobil helps my body from getting to stiff. Some days i over do it and just need to rest the next few days. Sleep can be challenging, i feel it has been more side effects from the meds. You can always talk to your doc to see if they can prescribe something to help, i have just been using melatonin when needed.

    Finance my cause alot of stress. I have been fortunate that my employer has been very helpful in my situation, along with living off my spouses income. I am in California and am receiving EDD disability, it only last a year, I believe it is about 70-80% of your present income. Much quicker to get then SS disability from what i understand. Hope this can be some help. Thanks

  • acebass
    acebass Member Posts: 11 Member

    Hello, Jason - It's Rob(Acebass) - 76 year old man. Diagnosed 2013 with MM. Cancer free since 2014. Bloods are all normal. Velcade caused severe neuropathy in my legs, and my feet are paralyzed from the ankle. Honestly - I no longer trust doctors. I was told I had 5 yrs max to live; I'm still here. The top Ortho guys all told me I'd never walk again; I figured out how to recruit other muscles and compensate for my broken back - I literally threw down the crutches and started walking with a cane. I got a neurostimaulator to reduce the back pain and get a little feeling back in my legs. I do Zumba every morning. I'm 5 inches shorter (my broken vertebrae collapsed), but I relearned to play Bass Fiddle(evrything was now in a new place) and managed to hold First Chair in a Symphony Orchestra for over a year. DUDE - You can get your life back, if you learn to live with the new limitations our illness has forced on you. I suggest you get a back xray;myeloma weakens and breaks your bones without you knowing it. After that, you need to strengthen your abdominals - situps, crunches, etc. Your abs will start supporting your back. I wish you all the best and hope you can conquer the myeloma and chemo side effects and getyour life back.