Question about getting diagnosed

Hi Alwaysscared,

Welcome to this corner of the forum and I’m really sorry to read about your current health concerns. I would start off by saying I’m not a medical expert, so your best bet is definitely to pursue this with the medical professionals, but here are some things I’ve learned about myeloma over the past 5 years:

- myeloma doesn’t follow a typical pattern, it affects people in lots of different ways so it’s really hard to say there is a one size fits all and the symptoms can be really general

- I have polycystic kidney disease and it is unconnected to the myeloma, so the cysts you mention might be nothing to do with myeloma

- the bone pain tends to be in a permanent place, because effectively the myeloma cells are attacking the bone in that area, so if your pain has stopped in one area, that’s a good sign it might not be myeloma

- any scan would normally spot bone lesions - I think they are pretty easy to spot regardless of the scan. But I suppose no one scan is 100% fool proof.

- proteins, I’m not sure to be honest. Certain types of myeloma, like mine, don’t show proteins at all in the blood - hopefully someone with a bit more insight on this will be along shortly

It’s really difficult to know with any certainty what might be going on for you at the moment. I would definitely push the medical teams for answers, that would definitely be the best route. I’m really hoping it is not myeloma and something altogether more straight forward to get you back to good health.

Hope this helps?

Greg

Thank you very much for such a fast reply.  The rib pain definitely comes and goes in random areas, but the hip pain does not.  It’s normally pretty much just the hip bone.  I definitely notice it more when I’m thinking about it.  

Do you think the kidney doctor I’m seeing could follow up on this or should I go back to my primary care doctor?

My gut feeling is that the GP is the best route, they can run specific blood tests for myeloma. My experience of specialist doctors is they know their specific areas incredibly well, but are not so great at the overall picture. Even though kidney problems and myeloma can be linked, you’re not 100% sure of what your dealing with here. I’d be tempted to push both of them to be honest, but the GP will probably be in a better place to get you some overall answers I think?

Greg

Hi, sorry to hear of your news and I also have not officially been diagnosed with MM yet as when I went to hospital last week to get my results from the ct and bone scan which didn't show up anything alarming but was then told the blood samples showed up a level to suggest MM of which I must admit I haven't heard before, but sadly do now, more tests required they say to either confirm MM or not.This all started about 6 months ago when my rib broke or snapped while out walking my dogs, small dogs that don't really pull you but the pain was dreadful, hospital scan for some reason didn't show the rib was broken, maybe they were looking elsewhere, however when I mentioned I hadn't fallen over then a whole range of scans were required and lots of blood samples taken and was told about the MM they think I may have, I was quite shocked with this news and wait for further tests soon, i also mentioned that some days are better than others and getting quite tired now and also mentioned that for sometime my heel is quite painful most days even more painful resting rather than standing and they said it could also be a possible link.

Hope you have a peaceful day  

Thank you for your reply and I’m sorry to hear that MM might be on the table for you, too.  If you don’t mind me asking, what initial blood work showed up badly for you? I had blood work done at the ER but I don’t think they ran any of the blood tests for MM. but my WBC and RBC was fine. No anemia. 

Thanks! I’m just worried my primary care provider will think I’m crazy.  I’ve suffered from anxiety, specifically health anxiety for awhile now. And I’m worried she will think it’s all for nothing.  I know she would order the tests, but probably with some exasperation.  It took me 2 weeks just to get a follow up with her after finding out about my kidney cysts.  

I do have a chiropractor I trust.  I wonder if I could have him order the blood tests? He might even be willing to do some xrays of my hip.  I really feel like myeloma must be what is causing my symptoms.   I thing else really fit.  Everybody kept telling me it was probably by kidney cysts but I knew it wasn’t because they haven’t ever bothered me.  

Thank you for the useful information. 

Also, I see that you are younger, like I am.  Do you feel like that hampered getting a diagnosis for you? Or did you get diagnosed fairly quickly?

It’s your call ultimately, I would do whatever feels right for you. Personally, I would go down the GP route if only because they’ll be able to pull in the right specialisms as needs be. Health anxiety is really tough, so I am definitely feeling for you. I’m hoping your GP will have the empathy to understand how important this is to you. Ultimately, a GP doesn’t want an undiagnosed cancer on their conscience either, so I hope they’ll run the necessary tests and not make you feel bad about it.

I’m really hoping this is not something serious, but I’m also hoping you can get some answers soon to put your mind at rest.

Greg

the consultant said to me that one of the blood samples showed a level or traces of MM and I will put in touch with haematologist dept for more tests and the consultant said that he couldn't answer questions relating to MM as it wasn't his field of knowledge which was ok by me.

Thanks.  I really hope it’s nothing serious, either.  I have read that having multiple infections can be a sign of MM.  Did you experience that? Other than a stuffy nose and some occasional sinus pressure, I haven’t had any infections that I know of.  Does that normally come before or after the bone pain? I have been around so many people with the flu and other virus and haven’t caught those, yet.  Would that be the type of infections it’s describing? Catching something that just won’t go away? I haven’t had any fevers that I know of, either.