Not Diagnosed – Seeking Information

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    It may seem strange that I’m here when I haven’t beeen diagnosed with MM.   However, feeling ill with diverse symptoms, done a lot of ‘reserach’ and would love to hear some opinions and experiences from people who have MM.

    A brief (very brief) history.  Breast cancer 2011.  Lumpectomy followed by radiation and meds.  Thyroid Cancer diagnosed ‘incidentally’ during CT scan.  Thyroidectomy 2012 followed by radioactive iodine treatment.  Took some time to get thyroid replacement sorted but now as good as it gets.   Also Osteoporosis diagnosis.

    In 2014, started to feel very tired, painful hips, headaches.  Because of my history, scans and blood tests done.  No prob.  These symptoms have worsened over two to three years.  Dx Depression, fibro.  Onc not convinced but couldn’t find anything.

    Last 6 months have been hell – a real deterioration in above symptoms.  Due for a total knee replacement in a few weeks.  Lower back and hips severe pain suddenly developed – also occuring in shoulders and neck.  Orthopaedic surgeon checked hips three weeks ago and said pain coming from back.  MRI of lumbar and sacral spine next week.

    In last two months,  burning pains in arms, legs and feet have been a new thing and very distressing – especially at night.  Feel as though someone has poured scalding water over me.  Also hot burning flushes all over body in day.  Feel like rolling in snow.  Lol

    Blood tests – many and often.  Done by different professionals so no one seems to have real big picture.  Last three lots of tests have shown nothing of much significance except rbc, hbc, mch at bottom of range with haematocrit just below range – but ferritin at very top of range.  Consultant who did these said I was borderline anaemic but not iron anaemic.  No further comment.  Also my ESR has been slowly rising and is now 68.  Bone profile done.  All ok.

    I have done some research into this anaemia issue and am concerned at what I read about low red blood cells and high ferritin.

    The very worst experience in all this is one that doesn’t happen often (about once every couple of weeks) but is terrifying when it does.  I’m usually standing when it happens.  Exisiting pain intensifies suddenly to very severe level, feel as though I’ve been hit with a baseball bat over my neck, get very hot and bad headache and weakness begins.

    I’m going to shut up now.  Well done if you’ve read this far without dying of boredom 🙂

    Any insights would be greatly appreciated.  I can’t carry on like this x




    Thank you for posting on the Myeloma UK Discussion Forum. My name is Ellen and I am one of the Myeloma Information Specialists here at Myeloma UK. I am sorry that you haven’t had any replies to date – it may be that no one on the forum has had a similar experience.

    Thank you for taking the time to outline the background information – your situation is certainly very complex. It must be very frustrating and frightening that, as yet, no one has been able to explain the reason for the symptoms you are experiencing.

    For a diagnosis of myeloma to be made, patients will be referred to a consultant haematologist who will carry out further tests and investigations to either rule out or confirm the diagnosis, you don’t say that you have been referred to this particular specialist – is it something you could discuss with your GP?

    Please do consider calling the Myeloma Infoline, Debbie, Jude and myself take calls on the Infoline – 0800 980 3332 – and we will be happy to discuss this with you in order to clarify how a diagnosis of myeloma is made if you think that will be helpful. Alternatively you can email directly to

    With best wishes


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