Hi Paul,
I hope you don’t mind if I poke my nose in here but I’m in a similar situation to you, I am awaiting the results from myeloma screening – whatever that means.
So how did I get here?
Some weeks back I had a bit of a nagging back ache nothing too bad though. Then at the weekend it got much worse to the point that if I took a deep breath my back spasmed thus I could only take shallow breaths. My partner said “Right, we’re going to the doctor”. Obviously we couldn’t get an appointment anytime soon on the Monday so she rang 111 and after the inquisition they told us to ring for an ambulance. The ambo arrived promptly and they said you need to see your GP but now not 6 weeks’ time. They then phoned the GP surgery and got us an appointment that day. The GP examined me and said “I’m phoning an ambulance!”. I was then blue-lighted, siren and all, into Cheltenham General.
They admitted me to the Acute Care ward and did a whole battery of tests and pretty quickly realised I had a chest infection and in addition my AF was not being adequately controlled. They corrected this with medication and within 24 hours I was fine.
Now for the nub of the issue: in amongst the battery of tests they did MRI and CT scans. This showed that I had a fractured vertebra (T5) and a hemangioma in the same area. At this point, since the primary reason I had been admitted had been attended to they sent me home.
On the discharge report it actioned the GP to review my drugs regime and to chase up the “myeloma screening” that they’d initiated. There was no discussion at any time about myeloma and it wasn’t until I came to read the discharge report that I became aware of it.
That was about a month ago …. I’ve heard nothing from the GP and so I’ve booked an appointment with “a Dr. at the GP surgery”, i.e. not my regular Dr. to discuss the state of play. I’m not expecting much to be frank. I expect they’ll say “Oh, we’ve got no results, we’ll have to chase that up.”
Now I’m the sort of person that needs to know all the details so I’ve done some research – I know people counsel against this but I feel better the more I know, even if it is hard to face. By gathering information from multiple recognised sources you soon get to know when something isn’t right or that the findings might be unfounded. So I was a little shocked to find out that I might be waiting for a death sentence with a very short time on death row.
So Paul, I know where you’re coming from.
I’ve been racking my brain for signs in my body that might support or dismiss a myeloma diagnosis.
I still get a bit of pain in my back under my right shoulder blade, which is about T5’ish. It seems worse later on in the day especially if I stand for any length of time with my back unsupported, maybe because the vertebra settle through the day I guess.
I’d known about the hemangioma for quite a while, probably about 2003 but it gave me no problems and was just viewed as an “anomaly” so I think that is probably a red herring. My situation is compounded by the fact that I have recently had very serious cardiac surgery (12 hours in the operating theatre) and some symptoms, like fatigue, are to be expected whilst recovering.
So I’m somewhat unsure what to think. I just need to get more data/information, to get refered to the right/best specialist in this field if I do have myeloma. Under the NHS constitution one has the right to specify who/where you want to be treated. I believe that the Royal Marsden have specialists in this area so maybe I should investigate that possibility.
Anyway thanks for reading this far Paul. I’m glad you posted your thoughts because I’m at ground zero and it’s helpful to read the supportive responses that you’ve had. I guess we both have to wait and go through “due process” but it is good that forums like this exist and that people like you are courageous enough to share their thoughts.
Regards,
Phil.
