Need advice

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Hello everyone. I’m new to this group. I am grateful for any advice. I am newly diagnosed MGUS with paraprotein 3G/l. I had my appt about this last Friday and they are concerned about some back pain I have so are sending me for an MRI next week. I’m having constant panic attacks about this. I have had back problems for years on and off and I suppose this back pain is a bit different to previous flare ups. It is in my lower back but this time hurting across my hips. Should I be concerned? I can’t cope with this waiting. I feel like I’m going to give myself a heart attack! My husband had Hodgkin’s lymphoma 4 years ago so this is all so raw for us still. 

  • Hi GailJ and welcome to the forum.

    Apart from the paraproteins, have you had anything else arising from blood tests? Examples would be high calcium levels, low eGFR (which measures how well the kidneys are working) and anaemia (which is very basically a low red blood cell count).

    This is from Chat GPT (I inputted your paraprotein levels and back pain):

    Doctors look for a combination of:

    "Higher paraprotein levels (often much higher than 3 g/L)
    Increased plasma cells in bone marrow
    Evidence of organ damage (known as “CRAB” features):
    Calcium high
    Renal (kidney) problems
    Anaemia
    Bone lesions or bone pain
    Without those features, myeloma is unlikely."

    The other thing that I must emphasise is that myeloma is highly treatable. The first load of treatment is not exactly fun (I have been through it), but it is effective and people get on with life afterwards. Personally, after going into remission in 2023, I am working, exercising, holidaying and generally enjoying life! Meanwhile, new and improved treatments are being developed and approved all the time.

  • I can’t thank you enough for this reassurance, genuinely. The waiting is awful and I have made myself very ill with the stress and worry. I was told on my last bloods that my anaemia and kidneys were fine. I’m praying that my back pain will just be a slipped disc etc. thank u again