[ds2021Participant]

I had an MRI scan done because I have been having pain in my knee. I had a blood test basic and rheumatoid factor screening 3 months ago but everything came back normal. I don’t have any symptoms of Myeloma but an MRI done about a week ago came back showing there to be non specific bone diffusion signal change and thinning or arterial cartilage. Off the back of this my advanced physiotherapist has ordered, among other things, a test for Myeloma. I know that it feels like a shot in the dark and it could be any number of things but now I’m scared to death that it will come back showing I have myeloma. What are the chances given that regular blood test results came back normal only 3 months ago and I don’t have any symptoms apart from knee pain. Would the bone changes alone be a marker?

[ds2021Participant]

Just to add (if relevant) I am a 37 year old female. Healthy apart from knee pain and Endometriosis. I have had my blood tested lots of times (normal screening) and NEVER had an abnormal result. My brother was recently (1 year ago) diagnosed with Rheumatoid Arthritis. I’m inclined to think that is my issue but I tested negative and also a few years ago too. Everyone on here seems to be talking about back pain but no one is talking about the knee. Perhaps this finding in the bone is just an anomoly (perhaps even a normal variation) but you can’t help but worry when you find out you are being tested for cancer. I guess I am just trying to quell my fears and looking for help in doing that. Why would they test for it if they didn’t think there is a chance that I might have it? I suffer quite badly from Anxiety and this blood test request has ruined my Christmas. I tell myself that the chances are quite low, I don’t have symptoms but I keep coming back to the ‘what if’ and it’s driving me mad. I can’t wait for the test and result to be over with so at least I can get on to the next stage of what to do about it no matter the result.

[lilibParticipant]

Hi ds,
Hope you are managing to have a reasonable Christmas, despite pain and anxiety. Firstly, I am not an expert, as I have known about Myeloma only since the end of July, when my husband was diagnosed with it. From attending the many meetings we have had with the Consultant, it seems that Myeloma mainly appears in the lower spine, pelvic girdle area because that is where the bone marrow is plentiful. I even think that our Consultant might have said that it does not affect the lower limbs or hands and feet because the bones there are much finer.

The first thing my husband knew about Myeloma was after a bout of persistent back pain, the GP ordered a blood test in which the hospital Haematology Dept detected an abnormality. He had to go to the hospital the next day to have a bone biopsy for them to check what they had detected in the blood, and then an MRI scan to be absolutely sure.

So, I hope that the above will help you to put your worries into perspective. Anxiety and stress are not good for anyone. Look after yourself, and if you do need more help when you’ve got a definite diagnosis, there are lots of people on this forum who are wiser than me, so keep asking the questions.

Lili x

• This reply was modified 2 years, 11 months ago by  lilib.

[ds2021Participant]

Thank you for your response Lili. That is helpful as I am finding myself on a roller-coaster of thinking none of what is happening to me is common with Myeloma but then I’ll read something that goes against that and I keep circling back to the bone issue and the anxiety goes up again. I’m sorry for your Husbands diagnosis. I feel like it is being discovered in reverse (if ‘it’ is even being discovered). I am truly beginning to feel like Rheumatoid Arthritis is the likely culprit as I started using tape on my knee yesterday and it feels a little improved today. I have medical anxiety as I have suffered many years with debilitating pain with Endometriosis (finally being managed with medication). I wish you and your husband all the best. Thank you for taking the time to quell the fears of a worrywort!

[mulberryParticipant]

Hi ds, don’t apologize for worrying, the forum is here for anyone who is worried about any aspect of myeloma, and all those who have the disease know the stress and uncertainty of the testing process that you are going through. I suspect it’s one of the worst times in all our lives.
Knee pain certainly isn’t a common symptom at diagnosis, I guess that you are aware that the defining features are high calcium levels, kidney damage, anaemia and/or bone (usually in the torso) lesions or fractures.
Myeloma is also more common in men & people in their 60s, 70s & 80s. Whilst none of this absolutely precludes you having myeloma as a young woman, it does make the chances thankfully slim. If blood tests you’ve had relatively recently haven’t shown anything untoward that should be a bit of reassurance. Most, if not all, myeloma patients have had a precursor, benign condition called MGUS, monoclonal gammopathy of unknown significance, which could have flagged some anomalies in blood, had it been tested.
However scary, it is always better to be tested for myeloma, and hopefully get a negative result, than to be one of the people who doesn’t get tested, who turns out to have had the disease for a long time, which unfortunately does happen. I am now very grateful that my myeloma was picked up incidentally in a general range of tests, as it enabled me to start treatment so much quicker than many patients and to now be in a good place.
Of course you will be worried until you get results back, and clearly you need to know what is causing your knee pain. I hope that you get all the test results back soon.

[ds2021Participant]

Thank you so much for getting back to me Mulberry. Yes all of those things have been keeping me from losing all hope and I do have to keep reminding myself of that. I had a normal blood screen only 3 months ago so I would have thought that if I was having pain that WAS related to Myeloma the blood tests would not have been normal 3 months ago. I know that being a young female doesn’t completely rule me out but it does make the chances much lower. I think what is messing with my head so much is that it was completely out of the blue the Dr didn’t say that is what they were testing for but only as a precaution it was a letter to the GP that I got a copy of that simply said of the findings in MRI and to send me for a full blood screen and myeloma screen. I obviously googled it because I’d never heard of it until that very moment on Christmas Eve when I opened the letter. Since then I’ve done nothing but worry. So much so I’ve had to refer to some anxiety workbooks in an attempt to control the anxiety. I know there is no point in worrying until the results come back but I think it’s human nature to fear the worst when you see the C word. Everyone on here has been so kind and helpful at putting my mind at ease (if only for a little while). I wish I could just get it over and done with. Friday is test day and then who knows how long the wait for the result will be. All I know is it will be an agonising wait.

[mulberryParticipant]

It’s natural to look things up on Google, but with topics like myeloma it is very misleading. Myeloma treatment is a fast changing area of medicine, but much of the online information dates back 5, 10, 20 years and some even longer, when prognosis was bleaker. Not that Cancer is ever an easy diagnosis to face.
What an awful Christmas period you have had with these tests hanging over you, made worse because you’ve had to wait longer because of the holiday period.
Although generally I have had the most wonderful care from my haematology team, I too have received some thoughtless and (in hindsight) unnecessarily worrying communications from some doctors who should have known better or been more considerate. Getting the copy of the letter just before Christmas when you couldn’t do anything other than worry, falls into that category. I feel for you. I hope the tests go well and you get the results back quickly.

[ds2021Participant]

I just wanted to do an update. I had an awful long weekend of hideous anxiety culminating in a panic attack this morning. I called my GP for my test results and thankfully my blood tests all came back normal (full blood count, ESR, CRP, LDH and Rheumatoid screen). Unfortunately I’m still waiting on the Bence Jones urine result to rule out Myeloma completely. I am feeling a little more relaxed (though not much – still heightend anxiety). I just can’t wait for this result to come in although I read it could take up to 2 weeks for that result. I really hope not, I just hope there was a little delay because of the bank holiday weekend. My back has been hurting and that has caused me to panic ALOT even though my back wasn’t hurting before all of this came up. I am adding 2 and 2 together and getting 5 I think. This testing period has without a doubt been the worst time in my life so far! I’m trying to keep positive and your kind words @mulberry and @lilib have been a comfort so thank you. I’ll be back to update with the results when I get them.

[lilibParticipant]

Thank you for the update. It’s good to know that things have progressed a little for you. Perhaps it will help if you regard the results you already have as reducing the likelihood of Myeloma down to a very small percentage. When you feel particularly anxious, try to focus on all the things that you know have ruled out the likelihood: the blood results, your age and sex, the fact that you had not had lower back pain before this time. (Back pain can be triggered by holding yourself tense due to stress.)

Hoping to hear your good news very soon. Take care, and try to relax. Worrying is not going to have any effect on the test result, so conserve your energy.

[mulberryParticipant]

I too am pleased to hear of your blood test results today. I’m not a doctor, but if my experience is anything to go by, my ESR, CRP, LDH and various aspects of the full blood screen were definitely out of normal range when I was diagnosed. I know that your anxiety won’t recede entirely until you get all the screening results back, but try to focus on the positivity of these results.
May 2022 get easier, and the reason for your knee pain prove to be more benign.

[ds2021Participant]

I just wanted to pop on to update further. After waiting for a week for the results it turned out they had lost my sample so I had to do another Urine sample for the Bence Jones test. I waited for 3 days before contacting the Dr for the results. Another agonising 3 days of panic attacks!

I got the results this afternoon and no Bence Jones Protein was detected so no Myeloma!

I wanted to thank you all for listening to my worries and fears and especially thank @mulberry and @lilib for their kind responses.

I wish you all the very best xx
Thank you

[lilibParticipant]

That’s excellent news, ds2021. Now, go and enjoy the rest of 2022! xx

[mulberryParticipant]

So good to hear ds2021. I hope your knee pain isn’t anything serious.

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