[peaches123Participant]

Hi , I’ve been diagnosed last year with mgus and being monitored every three months .my paraprotien is 12.5 and I’ve just been told my white blood cell count is borderline.
My real concern is new bone pain in my upper left arm that keeps e awake at night, doctors seem not to be worried about it and I’ve been given naproxen but I just can’t live with this constant pain, I’m tired all the time and really concerned it might be progression ,any advise would be welcome xx mandy

[Anonymous]

Hello Mandy, Im five years into this journey im smouldering with PP of between 8 to 10 and was intially monitored every 8 weeks then 3 months and I have now had 2 six month appointments with next one due in December its difficult to get your head round and we are all different I had alot of shoulder pain at around the 3 year mark and the consultants and doctors never bothered at all but it was never constant I would think you need to speak with your GP or consultants again and hopefully they may look into it further …keep positive x

[peaches123Participant]

Many thanks for getting in touch,I had an appointment this Thursday but they have just cancelled and will now get my results by letter.so I won’t get to speak to anyone.im so frustrated that I feel in so much pain, I feel there must be an explanation.
Were you first told you had mgus or was it smouldering from the go?
I also feel silly worrying when I only have mgus and others are dealing with a lot more,trying not to let it get me down but I’m struggling .xxx

[paulpixParticipant]

Hi Peaches
Just wanted to say, please do NOT feel sorry for worrying. The problem with Myeloma is how hard it is to diagnose and in some cases even to find, mine was non-secretory so it doesn’t show up very easily in blood tests making it very hard to diagnose. Luckily I had an MRI and it was discovered.

When you say Doctors, have you spoken to your specialist or is it your GP?

Please stay strong as there is every chance it is nothing to do with Myeloma but the fear and worry are completely understandable. I stress every single day even when there is minimal pain or discomfort.

Any time you need to vent or talk, feel free to come here and do so, we all understand and hopefully we can help in some way

All the best wishes for you

Paul

[peaches123Participant]

Hi Paul, it’s my gp I went to with the pain and they said they would inform my haematologist so I suppose they are not worried either.
To phrase the quote “I’m sick and tired of being sick and tired!”
Thank you for your kind words x

[paulpixParticipant]

I completely understand that feeling

Do you have any contact with your haematologist or do you have a clinical nurse specialist even better?

[peaches123Participant]

Ok so latest results have come through
Hb (116.0)
Creat 66
Paraprotien 10.7
Calcium 2.36
Flc ratio 0.10
Any light on these results please x

[Anonymous]

I was told smouldering straight from the off by one awful consultant you’ll find some of my early journey back in the topics, I had private consultation and was told it was borderline MGUS but had to be Smouldering as I have weak immune system, so I took on supplements and new exercises swimming walking and cycling in my shed to try and stay healthy ready for the changes to come, my overall pain has lessened over the years and I’ve lost weight as well but the hardest thing is the daily stress of the illness and waiting for the changes to come, it has lessened over the years and only heightens at blood results times,
Your latest results I would have thought should be accompanied by a new appointment time and I used the length of time initially between appointments to try and think that they mustn’t be too bothered about changes if they didn’t want to see me for x amount of weeks plus with all the monitoring they can jump on changes quicker if need be.
Do contact Myeloma Uk nurses online or by phone they are fabulous and no question is wrong to ask xx

[juliecParticipant]

My husband had blood tests last year as he was suffering from IBS, it came back showing his platelets count was around 90, he had repeated blood and one came back normal, but then another 2 were low again. He was referred to haematologist in March, and was advised to have a scan on his spleen. Due to covid he didn’t have the scan till November. In the meantime the gp ran blood test again and in September his platelet count was normal, but then in November it went down to 120 and then following a repeat 99 then 94. He saw the haematologist yesterday who said the spleen scan was fine and he thought he may have a Pseudothrombocytopenia and to repeat blood test in 6 months, but he also mentioned that he has protein in his blood (6g) and said because of this they are keeping him on there books, but didn’t say anymore. I have since look this up on internet and am very alarmed that this may lead onto multiple myeloma. I am now very worried as this hasn’t be explained to us, and from reading about it on the web it say anything over 3g protein is smoulding myeloma that nearly always progresses to multiple myeloma. Is this correct as his white and red blood counts are normal? And they are not doing any tests on his bone marrow.
Thanks

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