Hi Soo,
I would push for a Haematology referral.
Good luck,
Helen
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Hi @Soo thanks for posting.
I expect you felt very shocked, scared and isolated when you received your diagnosis phone call.
My GP also said that that I should actively manage my Chronic lymphocytic leukaemia (CLL) when I was first diagnosed.
I have taken it to mean that if I go to the dentist I should make them aware that I have Chronic lymphocytic leukaemia (CLL) and that I am very susceptible to infections, if I feel I have an infection coming on I should immediately see medical advice and remind them of my Chronic lymphocytic leukaemia (CLL), if I have another condition I should make them aware of my Chronic lymphocytic leukaemia (CLL) etc.
I think you are right to perhaps take a concise print out of the definition of MGUS, any information they should be aware of and details of any medications or treatments you are on as it is a rarer condition.
The times I am asked about my medications and my mind goes blank so I just hand over a printed piece of paper now.
I have found being ‘proactively pleasantly assertive’ works for me.
I hope you get your haematology appointment and I look forward to hearing more about you, Look after yourself
Hi @Soo, thank you for your post and a warm welcome to our forum. May I ask how you’re doing? It can be difficult and overwhelming to receive a new diagnosis and I’m pleased to hear you’ve found some comfort in the posts from our forum members, a community that you are part of too.
I wonder if you’ve seen our MGUS booklet? I share this in case it’s useful for you. Myeloma UK also has information about MGUS and they do have an MGUS diary which has information and space for you to record your test results. This information might be helpful for your own knowledge, but also in your interactions with healthcare professionals. We do find that some people are managed by their GP, and others by a haematologist. It’s worth talking to your GP, particularly if there are on-going symptoms you are concerned about, and certainly you could ask if a haematology referral is warranted or can be made. I would say it’s always important to have your concerns addressed.
We’d be very happy to talk over things with you over the phone if that would be helpful, so please do keep our support line in mind (0808 2080 888). Do let us know how you get on. Best wishes, Tanya.
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Hi @Soo, it wouldn’t hurt to ask for a haematology referral if, like me, you think it would help give you a better understanding. To be honest you’ll probably be waiting months for it so you can always cancel if you decide you don’t need it after all. This forum is a great place to be open & honest about how you feel & to say the things you may not be able to say face to face. Welcome to the gang 
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Hi @hakanx is was just wondering how you are doing?
Take care of yourself
Recently diagnosed with MGUS. I actually had the paraproteins picked up in blood tests many years ago, and as a skin biopsy had also apparently shown amyloid I was screened further for myeloma with blood and urine tests, but then told I didn’t have it and no follow up was necessary. A bit over two years ago another specialist I see noted the abnormal paraproteins again and suggested referral to Haematology, so I finally got referred there right at the beginning of the pandemic, and they couldn’t see me. I did have GP do blood test monitoring since then, but finally got to see Haematologist for the first time about six weeks ago, and today had MGUS confirmed. I was probably more worried about the possibility of myeloma and amyloidosis 15 years ago (in my early 50’s) when it first came up as a possibility than I am now about MGUS, but just glad I am now getting regular monitoring as well as having the skin amyloidosis looked at again with a new referral to Dermatology. I’m not sure I really need any other support right now (I have access to quite a lot of information already), but it’s really good to know this forum exists.
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Hi @cemc, thank you for sharing your story, and a very warm welcome to the forum. Certainly, this safe and welcoming space is here for you, so please do reach out for support when you need to. Our Support Team are also here and if you ever wish to talk any of this over, please don’t hesitate to reach out to us- Blood cancer information and support by phone and email | Blood Cancer UK.
Do take care of yourself.
Best wishes,
Tanya.
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Hi @cemc I am really glad that you have found us, whether you feel you need us or not, now you know where we are anyway.
I think that we are a friendly, supportive group so please pop on here at any time.
@TanyaBloodCancerUK has given you the Blood Cancer UK support line details.
Good to meet you, look after yourself and be kind to yourself.
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Thank you for Sharing your story and it is good that you have finally ended up under the care of Haematology. I didnt even know that skin amyloidosis is a thing and that paraproteins can effect your skin. Do you know what type of paraproteins you have? I have igM kappa. They first found a year ago in some rheumatology tests. I wish you well, Helen
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Hi all.
Bryan here from Australia. 37 years old (2 days ago) . Tingly hot feet at times-probably the only relatable symptom. Nothing else.
Bloods came back as small paraprotein (4 G/L I was told) IgA. Lambda? All new terms for me .
Had a skeletal survey and will get the results next week along with having a bone biopsy tomorrow. Haematologist said I didn’t need to do this, but he offered it up for peace of mind of “knowing vs not knowing” whether it is MM or MGUS.
Hmmmm I think their concern is my age. I know a little bit now and extremely Unusual to have MGUS at 37, although I would like to assume also unusual to have MM at 37. Heard of anyone else getting MGUS under 40?? GP did say common for people over 70 (5%) but my age hmmmm
Anyway, obviously I’m scared, can’t deny it. The procedure tomorrow doesn’t bother me, it’s what they see under the microscope. I have two daughters under 5.
Of course I’m hopeful for a MGUS diagnosis as the alternative sounds like a disaster (Google) , but obviously if I find out it’s MGUS, I can foresee my life being altered mentally probably more than physically.
Sorry for the rant.
Bryan
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Hi@Btowers,welcome to the forum.I am so sorry to hear of your symptoms and ensuing investigations which although worrying as you say they have been offered for your peace of mind,also being a young age and with your young family .I have MGUS IgG kappa on “watch and wait” blood tests so Im not too bad plus I am Grandma .I have read on the forum that much younger people have been diagnosed with MGUS and MM.Since being diagnosed myself I have had a lot if support from the Nurses at BCUK ,either @GemmaBloodCancerUK @TanyaBloodCancerUK @Heidi_BloodCancerUK plus www.myeloma.org.uk have a support line and recently I watched a very informative video on the site interviewing a young woman in her 40s with MM and she was doing well ,however everyone is different but you may get encouragement from that .
Bryan I read you are from Australia,good pn you.I am very fond of Queensland and spent some hot summers there ,I gather you are resident in UK.www.myeloma.org.au also have good info.
I am wishing you well for your procedure tomorrow and let us know how you get on .
All the best
Bannanacake
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Hi a great big welcome to our forum @Btowers and I am glad that you have found us in the UK.
However, having a friend in the US, that was given the same diagnosis, at the same time as myself, 18 yrs ago, I have realised that some countries have different treatment approaches.
It sounds as if you have a thorough Haematologist which is positive.
I am not surprised that you are feeling shocked and scared on so many levels. that is so natural, give yourself time to come to terms with it all.
You mention the mental effect and some of us have found we needed some help with that. I found counselling helped me.
@Bannanacake has given you a brilliant response.
You certainly did not rant, but feel free to rant if you need to. I hope this is a safe place where you can say how it really is for you, we understand on here.
Please do let us know how you get on when all your results come back
A very happy birthday for 2 days ago and the really important thing is that you look after yourself and be kind to yourself.
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Hi guys,
Just introducing myself.
I am 27.
Was told 3 months ago that I have fatty liver, but noticed in my blood test reports that my IgA level was 4.9 g/l (lab cut-off is 2.9, and rest of my bloods except some from LFT’s are fine). Have been worried since and asked my Doctor about it a couple of weeks back but they aren’t worried by it and will just keep an eye on it, not officially diagnosed with MGUS. That cheered me up a bit but now I am worried again because I have been reading up on google and it’s made me scared.
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Hi All,
My name is Angela and I am 52. I have recently been diagnosed with MGUS and am currently on the waiting list for haematology. It says that mist people are okay but I am in constant pain in my back and hips
The doctor has prescribed zapain but will not do any more until the referral.
I am feeling down and although was signed off work I have had to return due to no pay
I feel like I am living with a ticking timebomb as noone can say either way what I do or dont have
Noone really understands it, when I say I am in pain they say well most people dont get any pain.
I have not been scheduled in for any more blood tests just this referral and one for rhuematology, rhuematoid arthritis.
It is great to know I am not going mad and others here will know what I am talking about and be able to relate.
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Hi @Elloyd27 perhaps usually your Dr is much more reliable that ‘Dr’ Google.
‘Keeping an eye on it’ is actually ‘watch and wait’ or ‘active monitoring’ which quite a few of us are on and that cheered you up, perhaps just sit with those feelings
Celebrate the small wins and be kind to yourself, we are here to support each other and if you would like to speak to someone the Blood Cancer UK support line is there for you.
Hi Angela
I’m so sorry to hear your in so much pain. Unfortunately referrals can sometimes take a while & as frustrating as it can be try to remain positive. Have you tried chasing your referral with your GP? It may be worth making an appointment with your GP to discuss your pain issues further & to see if there are any self help recommendations they can advise. Your definitely not alone & we are all here to support you.
Warm wishes & positive vibes
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Hi Bryan,
Hope you are well and all went well with the biopsy and your other tests. I understand exactly how you feel. I got diagnosed with a Basal Cell Carcinoma at a similar aged to you. I was pregnant, after second round of IVF/ICSI, but it was all dealt with very quickly and thankfully BCC’s dont normally spread. There was the anxiety, the why me questions, the feeling of living in a night mare and everything being a bit unreal. I am now 63 and now have igM kappa paraproteins in my blood, which were found only because I had one of the politely assertive moments with a GP and she ran some blood tests. Some ANA antibodies were found and I was referred to Rheumatology who found the paraprotein. I am on “watch and wait” and have blood tests every 3-4 months. It sounds like you have a really good Haematologist, who recognises that it is a worrying time for you.
Have you read the booklets in MGUS on the Macmillan Cancer Support and Myeloma UK websites? They are quite informative.
Best wishes
Helen
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Hi Helen,
I thank you for your response, along with the information provided by yourself Erica and banana cake in your initial reply.
I haven’t read those resources yet, but I will.
I’ve gone through a period (as you can imagine) of googling a lot then needing to step back from it which is where I am at now just to keep my mind from somewhat drifting.
I am sorry to hear about your diagnosis of Basal Cell Carcinoma in that time of life for you along now with some paraproteins. It really all is disconcerting, especially with “watch and wait” without being able to influence…
Bone Biopsy was fine, will find out results on the 8th November on whether it is MGUS or MM.
Thanks for your msg, I’ll keep in touch.
Bryan
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Hi Bryan,
I am so glad that you do not have long to wait for your bone marrow results. Fingers crossed that it is mgus. The really good thing is that you will get a clear diagnosis. I joined a research study in the uk, looking into why some people with mgus and related conditions developed cancer and others don’t. A bone marrow biopsy was one of the voluntary tests on entry, which I chickened out of. May be I shouldnt have.
I find waiting for test results an anxious and stressful time and try to keep myself as busy and as distracted as possible. Try the Friday Jukebox, if you haven’t already.
Helen
Helen
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Hi @Btowers please do let us know how you get on on the 8th.
Good news that you have stopped Googling and that you are trying to keep your mind from somewhat drifting. Not one of my strong points!!
Be kind to yourself
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