I’m so glad to have found this forum as I’m terrified of what’s ahead. I’ve had head pressure and extreme ‘vertigo’ symptoms for 9mths now and last week I was given a CT scan in the Emergency department (they suspected stroke), which revealed a growing bone cyst inside my skull bone, frontal lobe. An MRI a couple of days later showed it more clearly, and yesterday I got a call from the doctor who ordered the tests to say my bloods were back and were showing abnormal protein levels. She explained that this, along with the bone abnormality in my skull isn’t a good combination and said it’s potentially very nasty, quite nasty or nasty but manageable and that she was red flagging an appointment to a haematologist who will see me very quickly (within 2 weeks). All of this has happened within the last 7 days so it’s a lot to process. I’ve also had pain at night in my sternum and a burning sensation in my hips, but I’ve been more or less ignoring that. Now it makes sense. I’m 47. I don’t really know what I’m asking, but I suppose if anyone has any similar experiences of a red flag referral considering the MRI has been done and the bloods have been done, what am I likely to hear next? Will there be more tests or will they have seen enough already to diagnose myeloma? I haven’t told anyone in my immediate family (my children/siblings/dad) except for my fiance and my aunt as I don’t want them to know until they have to. Thank you. Emma
Oh, @Emma13 what a terrifying whirlwind you are suddenly on.
I am so glad you have found our forum so quickly you are now no longer alone.
I had a similar shock when I was being treated by a gynaecologist 20 yrs ago and he gave me a blood cancer diagnosis and referred me to the haematologist. He said I can do no more for you, so I thought he meant nobody could do any more for me and my days were numbered.
I am not a medical person, but I believed if a cancer diagnosis was being considered then a 14 day ( ‘red flag’ whether that is said or not) referral to the appropriate department was the NHS guideline.
Now is a good time for you to write down a list of all your symptoms, their severity and impact on your life.
Then all your fears and questions you might have.
You ask questions about the future that no body can answer at this stage.
We are all very unique with differing medical histories.
Perhaps you are in shock and as you say terrified of the unknown, in my experience that takes a long time to process.
My diagnosis is being actively monitored (commonly called watch and wait), many other people start treatment immediately or at different times.
When you do get an appointment you might like your fiancé or aunt to go with you.
I would say be very kind to and really look after yourself.
Please do keep posting as I look forward to hearing more about you
Emma13,
I am so sorry for all the shocks and symptoms you have been putting up with.
I would suspect that you will have more blood tests, either on the day, or they may request them a couple of days earlier. They are so clever at reading our stories through our bloods. When I first got chronic myeloid leukaemia all I knew about was red cells white cells and plasma. There is so much more to our blood and the range of tests and information they can get from it is amazing.
Do take a notebook and pen so you can understand and remember what you are being told. My husband was an essential support in the early days because you are not well and it makes it hard to focus. Driving and parking in a hospital is also just one challenge too many when your brain is buzzing with information and questions.
Not long now and it will all become a little clearer. Do know that we are thinking of you and wishing you well.
Hi and welcome
I wasn’t red flagged but my myeloma was picked up after being admitted with a gall bladder infection. Thankfully the consultant at the time had the wisdom to investigate why I was so anaemic.
CT Scans and MRI can pick up bone damage from myeloma and can I suggest you tell your GP that you have other pain so they can have a look again at the scans.
I will link you from myeloma Uk diagnosis so that gives you some idea
Hope that helps 
Thank you all so much for your help and kind words. It makes this all a little less lonely and scary! Been a long weekend! Hopefully I’m called to the appointment quickly this week as the waiting is so hard (as you all know too well!)
Thank you!
Thank you so much. Yes the CT and MRI I had done on my head has shown bone damage in the skull, so it was discovered accidentally as they were looking for signs of stroke. So that’s abnormal proteins and abnormal skull bone area - not a good combination. Can I ask were you diagnosed quickly?
Yes I was
I went into A&E two weekends on the trot
Within 6 weeks i was diagnosed with myeloma on the Wednesday CT scan the following Tuesday another BMB on the Wednesday started chemo on the Friday
This was back in 2017
I wasn’t in a good way and I have boney disease lots of lesions I also had a tumour which fractured my T9
Hi there, i suspect a bone marrow biopsy is next, that would confirm myeloma. Im a year past my stem cell transplant and so far doing ok, its very scary theres no doubt but i know from experience hearing positive stories from others who have it and are going through treatment are really helpful. my bone marrow was 95% infiltrated with it at diagnosis so i was very far advanced (i was a long time waiting to get diagnosed) but with the treatment available im now in remission, im early 40s and no one expected it for me. i hope you get answers soon and can push on with treatment, but if it turns out to be what you suspect you have a lot to be hopeful about x
Thank you Bitsy, wow 95%…gosh I’m so glad to hear you’re now in remission. Thats such good news!
I feel like this is not real, it’s a whole new different world isnt it!! Positive stories definitely do help, so thank you so much for sharing yours xx
My bone marrow showed 75% myeloma cells at first diagnosis I was 49 I’m now 56
I just got my appointment date today. So I go in next Wednesday at 10.50am. The secretary wouldn’t/couldn’t tell me any detail on the phone, just that all will be discussed on the day. So I’ve 7 more days to wait until I know for sure what’s going on. In the meantime, I think the only thing to do is to try and keep busy and distracted. I actually feel a bit lighter in the head knowing I’ve an appointment date coming up.
Oh my goodness 75% is a lot too! Did you have a lot of bone pain going on? I was putting it down to peri menopause, but I’ve pain in my knees, hips and chest bone (and head which is where they’ve found what I believe is only the first of many lesions). I can’t believe they spotted the lesion back in June on a CT scan in A&E and thought it too insignificant to mention, and now it has grown.
Looking back my legs would ache I put that down to standing at work. I also had pain in my one knee but couldn’t get an appointment
I was falling asleep after work in my car in the car park while waiting for my daughter to finish college.
I put it all down to it could be the menopause.
I then started to get pain in my tummy which would double me over and feeling sick I would be on my knees on my bed. This got slowly worse and couldn’t stop being sick called 111 who sent an ambulance and that’s when my gall bladder was found to be infected with a large stone.
Again I think this was due to the bone damage as my myeloma was active 6/8 months before I was diagnosed.
It had also caused my kidneys to break down which happens as the boney disease (calcium from the bone lesions) is filtered through the kidneys and blocks the tubes
Other than that I never noticed any bone pain apart from my lower back considering the lesions I have.
I have relapsed in 2021 and I have recently found out I had fractured ribs as well as new lesions in various parts of my spine
Unless the medical professionals dealing with you have seen myeloma before it seems to get overlooked
Hi @Emma13 yes, I have found that secretaries are literally given a list of patients to ring with appointment times.
However just having an appointment date really helps me too.
Keeping busy and distracted seems a good plan to me.
Please do let us know how you get on and look after yourself
Emma13
I have been thinking of you Emma and hoping that you are making good sense of all that you are being told and feeling supported by a great hospital team.
We all would love a detailed roadmap of where we are going with treatment but some times it is little steps, check and the next step. Once you are secure in your team it is easier and the Macmillan nurses or whoever does support at your hospital, can be so helpful. Do not be afraid of using them. You are not a nuisance to them. They are there to help.
Best wishes Grandma Jo
Hi Emma
I’m so sorry to read all this and I hope you’ve managed to get some answers.
Unfortunately my symptoms sound very similar to mine. I’m just on the starting line of investigations and the wait and unknown is awful.
Take care xx
Hi Amanda
I hope you are doing as well as can be expected. The waiting and worrying is immense.
A wee update from me is thst on 8th March after many investigations including a PET scan i was diagnosed with Multiple Myeloma. The scan showed 5 bone lesions including 2 in my sternum which is where i was in a lpt of pain.
I had two biopsies, one from the sternum.and another from my hip, but i still dont know the results of these yet.
However on Good Friday i began a 6month treatment plan which means im on a lot of daily medicines plus two visits to hospital a chemo package known as DVTD. This will be followed by a stem cell transplant in Autumn.
So far, the medication is keeping my pain at bay which is such a relief. Ive a long road ahead.
Please do keep in touch and let me know how you get on
I will be thinking of you
Emma
Hi Emma
Lovely to hear from you and thank you for your reply.
I’m doing ok and fortunately work have been very understanding considering that I’ve just started a new job 
I’m waiting for a haematologist appointment and a CT scan (although that’s for potentially fibrosis). Apparently ‘urgent’ for the CT scan is 6 weeks 
It sounds like you really have been through the mill and I’m glad you’re getting the treatment you need - albeit not pleasant by the sounds of it.
Can I ask if you had any other symptoms other than the dizziness?
I wish you all the best and hope the treatment isn’t too awful.
Please keep us informed of how you get on.
Take care xx
Hi Amanda, my other main symptom which has turned out to be the biggie, was a pressure in my sternum at night when turning in the bed. It came to the point I wasn’t looking forward to bedtime though I can’t say back then (about October) it was painful, more just very heavy and uncomfortable. That continued to develop until early Feb when I began noticing a very sharp pain there if i moved suddenly or stretched, then it became sore if I laughed, coughed, sneezed and over the past few weeks up until diagnosis it was so painful at night it kept me awake. So you can imagine the fun it was having a guided biopsy done there! Since diagnosis I’ve been on both long and short forms of morphine which helped but didn’t get rid of it altogether, though now since I began treatment and my consultant gave me pain patches to wear at night it certainly has calmed. I’ve also discovered I have a plasmacytoma there (I just saw that written on a letter to my GP today!) so that’s something else now I still have to be officially told about. It certainly explains the pain! I do find myself very tired so I have to watch the energy levels. I’m in N Ireland, so my waiting time for an urgent appointment was quicker at 2 weeks (for the haematologist) as it was red flagged through A and E which is where I presented with dizziness and they did the CT scan there and then to rule out stroke. So only for that visit to the emergency room, I don’t know what way my investigations would have taken shape. Everything seemed to happen very fast but at the time it felt like purgatory between appointments so I know how you feel x
Gosh @Emma13 a lot is happening to you, but I always like a plan.
We are here for you too, so please do keep us updated and take lots of special care of yourself