Hi I’ve recently been diagnosed with Monoclonal gammopathy of unknown significance ('MGUS') which was a bit of a shock thi started due to ongoing leg pain I’ve had ct mri scans and also bone marrow biopsy wich shows 9%plasma count I’ve been told not to worry and now been put on a watch and wait has anyone else had bone marrow tests and is 9%count a cause for concern any feedback would be much appreciated as im new to this
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Hi @13.57.a, welcome to the Forum and I’m sorry that you’ve gone a few days without a response.
A diagnosis like this, with everything that’s gone into getting there is a lot to process, and “try not to worry” is much easier said than done when you’ve just been through all of that. I hope you’ll be able to find some reassurance here on the forum. I’m going to tag a couple of our community members who’ve been through something similar -@zanzibar and @Teddy, please don’t feel any pressure to respond, but if you’re happy to share a little of your own experience, I know it would mean a lot.
I’m going to bring in our nurses on the question about your plasma count, as that’s really something they’ll be much better placed to speak to than I am - @BloodCancerUK_Nurses. In the meantime, we do have information about Monoclonal Gammopathy of Undetermined Significance on our website and our colleagues at Myeloma UK have an information sheet on MGUS that may be helpful to read over
And if you scroll to the bottom of this page, the Related topics feature will suggest other threads the Forum has matched to yours, so that’s another good way to find people who’ve asked similar questions.
Our Support Line is also there if you’d like to talk things through with someone, and it is staffed by expert blood cancer nurses - you can call them on 0808 2080 888 (option 1) or email support@bloodcancer.org.uk.
Keep posting whenever you need to, you’re not on your own here.
Take care,
Ceri - Blood Cnacer UK Support Services
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Hello there @13.57.a and welcome to the forum at what I imagine must be a worrying time.
Apologies for not greeting you until now. I see dear @Ceri_BloodCancerUK has shared all sorts of great links and advice.
May I ask how are you doing a few extra days on since diagnosis? I remember being in a bit of a daze after finding out I had Polycythaemia vera ('PV'). My advice would be to take your time right now and be easy on yourself, it can feel like a big shift with diagnoses like these. Perhaps an understatement!
Do have a look at those links Ceri shared as you’ll find lots more information, and I really can’t recommend enough calling the Blood Cancer UK nurses as you’ll be able to talk through medical aspects of your diagnosis and what to expect with blood test results etc.
From my non-medical perspective, if my treatment was watch and wait AKA active monitoring then I’d try to let myself feel a slight sense of relief as that typically indicates stability. Might be worth checking this with your specialists as they know your unique set of test results, but I’d take that as good news.
Do keep us posted about how you get on @13.57.a and have a further look around the forum as you’ll find many others living well with Monoclonal gammopathy of unknown significance ('MGUS') here.
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Hi @13.57.a, happy to share my experience, although it is slightly different from yours. I haven’t had a bone marrow biopsy yet, although my Monoclonal gammopathy of unknown significance ('MGUS') numbers are not insignificant (14 g/L m spike and a slightly abnormal FLC ratio) and it has been spoken about.
I guess I can tell you about the emotional rollercoaster I’ve been on. My diagnosis was a shock too, after a fairly drawn out process triggered by some inconclusive results on a routine mammogram. For me, my Monoclonal gammopathy of unknown significance ('MGUS') diagnosis was a mix of relief (because breast cancer and lymphoma were also on the table) and anxiety. I’ve found it difficult to process because, while I’m not actually sick, I have this constant ‘what if’ feeling, which has at times been overwhelming, but now mostly just sits at the back of my mind. I’ve also found it difficult to accept that there’s nothing I can do about it. All I can do is keep myself in the best shape possible to deal with any future issues, so I’ve made some changes to my diet and lifestyle to feel like I’m doing something, and just try to keep living my best life!
I was diagnosed back in 2024 (in the lead up to my wedding - not what I needed!), and have been on watch and wait ever since, with 3 monthly check ups for now. My haematologist is very cautious, which I’m definitely happy with! While I’m now mostly able to push the Monoclonal gammopathy of unknown significance ('MGUS') worries to the back of my in between check ups, I do still get a little anxious around check up time. The level of anxiety has definitely decreased over time though as I get used to this new normal.
My numbers have been gradually rising since my diagnosis, but I’m hopeful that they’ll be considered stable enough to push the check up timing out a little eventually. My haematologist wanted to be extra cautious for the first few years, particularly since I’m young for an Monoclonal gammopathy of unknown significance ('MGUS') diagnosis (diagnosed at 40) and I have one of the higher risk factors (abnormal FLC ratio) and am relatively close to another (m spike above 15 g/L).
Monoclonal gammopathy of unknown significance ('MGUS') is largely considered to be asymptomatic, but if you spend a bit of time in Monoclonal gammopathy of unknown significance ('MGUS') groups, you’ll note that there are a few relatively common symptoms, including fatigue and neuropathy. I have struggled a little bit with fatigue becoming a bit of an issue over the last couple of years. It’s not debilitating, but has sometimes made it difficult to keep up with full time work, dance training and social commitments.
Not sure how much of this has been relevant to you, but I hope there’s been something in there that helps.
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Hi @13.57.a
Welcome to our forum. I am sorry to read about your recent diagnosis of Monoclonal gammopathy of unknown significance ('MGUS'). It is completely understandable that is came as a shock to you. As @Ceri_BloodCancerUK previously said, being told not to worry is easier said than done. It will take time to process and it is good that you have reached out to us here on the forum. We are all here for you and I can see you have already been given some great support.
A normal bone marrow has 1-2% plasma cells. If the bone marrow has 60% of plasma cells or more, this is known as a myeloma defining event. Whilst you will not be monitored with regular bone marrows, you should be having regular follow ups which includes blood tests.
If it would be helpful to talk things through in more detail, please do not hesitant to contact our nursing support line on 0808 2080 888.
Kind regards
Fiona (support services nurse)
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Thank you all for your replies it helps a lot to feel supported regarding my tingling sensations, I’ve had this on my lips for about 6 months I also started to get them all over my body from arms hand legs and feet even on my torso although not all the time when it happens it feels like I’ve been stung I reported this to my GP about 6 weeks ago and was referred to a physiotherapist after a meeting he contacted me to say because of all the tests and being diagnosed with Monoclonal gammopathy of unknown significance ('MGUS') that maybe I was looking for symptoms to fit the diagnosis this has made me feel a bit uneasy and embarrassed to contact them again the all over body tingling has come back I don’t know if this even has anything to do with Monoclonal gammopathy of unknown significance ('MGUS') I was only reporting new symptoms
Kind regards
Norman
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Hi @13.57.a
I am sorry to read that you were made to feel embarrassed by your symptoms. I would suggest contacting your haematology team instead of the GP. They are there to support you so it is important that you let them know of these symptoms especially if they are new or worsening.
Let us know how you get on.
Kind regards
Fiona (support services nurse)
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