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Does this sound like Myeloma? (SPEP and uBJP clear)

worriedanon7
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Hi all,

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I have posted a fair few times in this group and hopefully this will be my last. Just seeking advice so I can go to my doctor next week with a bit of a game plan.

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Symptoms I have:

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- Extremely bad neck pain going into back of skull and radiating into left arm. I've noticed a tiny pea lumped size node appear. Pain is more on left side of neck.

- Localised rib pain in the RUQ of abdomen (had this for about 6 months) also slight rib pain in LUQ

- Lower back pain above pelvic area (GP has said I have piriformis syndrome which I'm dubious)

- When I put my shoulders back my chest hurts significantly (pain below shoulder blades too)

- feel weak with fast heart rate a lot of the time

- Dizziness and major brain fog (sometimes just end up staring into distance)

- neuropathy (burning/tingling arms and legs)

- Restless Leg Syndrome

- Foamy pee (no bence jones in urine my test showed)

- Tinnitus

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It's important to note I've had an FBC, SPEP, uBJP, Immunoglobulin, Liver, Calcium and Renal tests. These have all come back clear. Only concern in slightly raised blood viscosity and high albumin (but I've heard low albumin is more of a sign of MM?).

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My GP will not investigate MM further for me (as both SPEP and uBJP apparently rule out heavy and light chain MM), but I need advice whether this sounds like MM or not, so that I can potentially change doctors or push for more testing? I'm worried its either a non-secretory version of MM or a light chain version that has not been picked up by my testing.

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Thank you all,

  • Offline

    Hi [@worriedanon7]‍ , it sounds like you are having a tough time. 

     

    Doctors have set protocol, almost like a flow chart that they follow for referral for further investigation. It sounds like you haven’t met that criteria why he won’t refer. 

     

    MM is a blood cancer, and as such it alters the values in the blood. The bloods you have had done would have showed some changes - usually, as you say Albumin would be low. Haemaglobin would also be low as the cancer cells crowd out the bone marrow reducing its ability to make red blood cells. They would possibly have also done a test called serum electrophoresis, which shows if you have something called a paraprotein - this is an immunoglobulin which replicates itself - a diagnosis of MM requires a paraprotein of a reasonably high level (unless it’s the light chain only version - which would need a very high light chain ratio), in conjunction with other factors such as anaemia, abnormal free light chain ratio, alongside the bone pain etc. 

     

    It sounds a bit like you have some kind of disc compression which is causing your pain and your pins and needles (pins and needles in MM are associated with raise free light chains - which it sounds like you don’t have as you had no bence jones). I would certainly keep pushing for answers as you’re clearly unwell, but MM has likely been ruled out. 

     

    Hope this helps. X

  • Offline in reply to NorthEast

    Thanks for the response [@NorthEast]‍ ,

     

    I had the SPEP (serum electrophoresis) which came back with no monoclonal spike (proteins), and again my urine test with no trace of bence jones light proteins. My GP this morning has said for me to drop the idea of MM, which, I will do as I trust his advice and he was the one who originally said I need the Myeloma tests. He did mention that my other levels would be off i.e. calcium would be higher, and possibly liver or kidney levels off etc. So I'll drop the notion of MM now, and focus on finding perhaps a non-cancerous cause for my problems. 

  • Offline in reply to worriedanon7

    It’s good to know they’ve ruled it out, not a nice cancer to get. Good luck on the hunt for the problem, hope they soon get you sorted. X

  • Offline in reply to NorthEast

    Thank you [@NorthEast]‍ ,

     

    It will be hard for me to let go of the idea of MM, but such are the facts. I would have preffered if they ran a light chain serum assay instead of urine test but I have to live with that. I think I'll worry they have missed a light chain Myeloma diagnosis, but, in all likelihood, it is not that.

     

    What do you think the likelihood of this is?

  • Offline in reply to worriedanon7

    Hi Dan,

     

    I have all the same symptoms that you are describing and suffer with Health Anxiety that can be dibilitating. I have had x rays that have been fine, blood tests that the GP was not concerned about and I was told that it was SI issue that was causing my issue. I still don't believe them and requested a urine test for protein which I took 4 days ago. If this also comes back clear I am definitely going to get help for my health anxiety as this will be what kills me and not a physical illness. 
     

    Good luck. 
    Ben 

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