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ramsnb
ramsnb Member Posts: 1 *
in Multiple Myeloma #1

Hi everyone,

I need some urgent advice. I have been having worsening bone pain since January this year and now its at a point where I cant sleep at night and i am feeling it in my head, neck, chest, back. lower back, arms and legs. I am also having a burning sensation feeling in my forhead and legs and having numbness in my hands and feet along with a burning sensation in the soles of my feet.

So far i have had all the Ig blood tests and the only one that came back high was IGE at 1814 UL <100.

I did the light chain essay and that was normal with a result of 0.94

All my other bloods are normal as in CBC, kidney function and liver function as all i have so far showing somethint is going on is my IGE and my bone scan.

I am waiting on the tests below to come back but not sure if they will show anything IGE related?

Beta 2 Microglobulin

Immuno Electrophoresis

Serum Electrophoresis

Urine Electrophoresis


I also had a low dose spect bone scan a month ago which found the following,

There is discovertebral degenerative change at the C3/C4 level. There is increased uptake in the anterior elements of C3 and C4, with reduction in disc height and endplate irregularity/sclerosis on low dose CT. 

Mild arthritic changes in bilateral AC joints of the shoulder.

Osteophytic lipping at T9/T10 anteriorly on the right. 

Slightly prominent activity at the tips of the L 1 and L2 spinous processes of keeping with enthesopathy.

Low grade asymmetric focal uptake at the left ischium suggestive of hamstring insertional enthesopathy. 

Any ideas of what i should do next as i am trying to get an appointment and see someone about this in Australia but because its IGE nobody has any idea and they keep telling me its nothing but i am suffering in lots of pain and neurological issues too. Should i be looking at doing another type of scan or bloods? not sure if they have anything apecific in Australia as in blood tests for IGE MM.

Please help any advice and guidance is appreciated .

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  • Rosiedoch
    Rosiedoch Member Posts: 8 Member
    #2
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    Have you had a PET scan? This shows a lot and looks like from your results you had a CT scan? Don’t stop asking questions and making your doctors figure this out. We are in the midst of trying to figure out my husband back pain after 8 months from his stem cell transplant. Bone pain is hard to figure out it seems and one of the worse things when dealing with MM. Good luck 🙂

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