[Anonymous]

Hi,
I’m new to this forum and just looking for some help & support.
I have been going backwards and forwards to the hospital & doctors for 6 weeks. My latest appointment with the Haemotologist, who told me she is testing me for Myeloma. Over the past 4 days the pain in my back, shoulders & ribs has become constant & excruciating. After a visit the other night to a&e as I was beside myself, the doctor advised me I had arthritis in my spine! I know from reading lots of info on myeloma that it is often misdiagnosed as arthritis.
I am waiting for blood test results, a ct scan & a biopsy.
I have never been in so much pain in my life & never ever been so scared 😣

[kevinParticipant]

Hello Bradlyn

Sorry to hear about your situation and pain. Although you haven’t had a diagnosis yet I know it must be worrying time. All I can offer is that I was diagnosed in 2006 and achieved full remission after each of my treatments and am in full remission today. It is becoming more treatable all the time. There have been many new treatments since I was diagnosed.
Best wishes
Kevin

[wallaceParticipant]

I am very sorry to hear of your pain, I was lucky enough to be diagnosed early and have very little bone damage. Having to wait and not knowing is awful, I remember that very well from presenting with kidney failure then the Cancer diagnosis was like a relief as we knew why they were failing and we could move forward. As Keven say, there is hope after diagnosis as the treatments are getting better, I am also still in remission since SCT in June 2007.

Best wishes, Mike.

[mulberryParticipant]

I hope that you have some answers soon. If you do have myeloma, try not to despair. I wish that I had realised that I would feel much better after treatment, I had misunderstood that because this is an incurable cancer, that I was on a one way downward spiral, but that is far from the case. I’m three years post diagnosis and feeling 99% fit and well (slight lack of stamina is currently my only symptom). Someone I know was in a wheelchair for six months after duagnisis, but 16 YEARS later goes on walking holidays and single handedly looks after an allotment!

[Anonymous]

So two & a half months later I still have no diagnosis. The Haemotologist did blood tests but nothing else, no scan, no biopsy. My symptoms have worsened so my GP has done further blood tests which have showed high calcium & anemia.
The only thing controlling my pain is morphine. I am so worn out I don’t want to do anything or go anywhere. I can’t focus on anything.
How did I get my GP to do more, can I insist on a biopsy & mri?
Can someone please help, this is driving me crazy 😔

[bearParticipant]

Point your doctor to this. Its the NICE guidance for diagnosis https://www.nice.org.uk/guidance/ng35/chapter/Recommendations#laboratory-investigations

[mulberryParticipant]

I suspect that you have gone to a local hospital. Ask your GP to refer you to your regional hospital. Major hospitals have far more experience of myeloma and it’s diagnosis ( or finding out what is wrong,if it’s not myeloma). Unfortunately it is not uncommon for it to take far, far too long for myeloma to be diagnosed. I would want to be seen by a consultant haemo oncologist. Look online for details of the special interests of haemo oncologists at your regional hospital and find one who specialises in myeloma. I hope you get the rest of the tests that you need soon.

[cswrozParticipant]

The high calcium would suggest bone degradation, which can be caused by Myeloma. The back pain could be due to a fracture in one of your vertebrae. Your doctor/GP should send you for an x-ray. If there is a fracture and you have no clear explanation for it, such as some trauma, (car crash, falling from height etc,) then the GP needs to explain how it could have happened. It is another pointer to having Myeloma and he needs to refer you to a consultant at haematology/oncology hospital.

[tony642Moderator]

Hi Bradlyn,

I am one of the peer support volunteers. I had severe lower back pain for several weeks. A trip to A&E told me that I had strained muscles. However I later found out I was in complete kidney failure which was casuing the pain. I also had 2 vertrbal wedge which was giving me pain which was indescribable. I was again admitted to A&E and when they realised what was going on, I was admitted straight to ICU.

Although I was suspected of suffering from MM when they eventually took my pain seriously, a bone marrow biopsy proved it and I was able to begin treatment straight away. If you are having trouble getting diagnosed, I would suggest being very firm and insisting that they carry out tests, and not being fobbed off with comments such as you are just getting old as I was.

Regards, Tony

[tony642Moderator]

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