I was recently diagnosed with monoclonal gammopathy of unknown significance (MGUS) in March this year. I don’t know the specific type I have but it was found through having numbness in my right foot and falling over. I have read many items on monoclonal gammopathy of unknown significance (MGUS) but feel a bit overwhelmed. Since having COVID back in Oct 21 I’ve developed severe nausea, diarrhea, stomach cramps and hot and cold sweats which occurs every 4 to 6 weeks. I have just had endoscopy and colonoscopy which look normal but biopsies have been taken awaiting results. Since being diagnosed with monoclonal gammopathy of unknown significance (MGUS) I’m anxious and worried that the nausea and diarrhea is a side effect and I’m also losing my balance and falling and have recently broke both my wrists and elbow. Basically I think I would like to know what questions to ask my consultant or gp please
Hi @Anncat, a very warm welcome to the forum, and thank you for posting. I’m so sorry to hear of the symptoms that you’ve been experiencing. It sounds as though they have been awful for you, and it’s understandable for you to be feeling anxious about them. I just thought I’d mention we have a support line, and if you’d like to talk this through, you’d be very welcome to call us on 0808 2080 888. May I ask when your next appointment is? We could go through things with you before then, if you wish to.
I thought I’d also share our MGUS booklet with you- Monoclonal gammopathy of undetermined significance (MGUS) | Blood Cancer UK Shop. As it says here, ‘People with MGUS usually have no or few symptoms. Some people have numbness or tingling in their hands and feet, or problems with their balance due to damage to the nerves (peripheral neuropathy) caused by the paraprotein in the blood.
If you experience any of these symptoms or they get worse, you may be referred to a neurologist (a doctor who specialises in conditions of the nervous system).’
You are very much doing the right thing by looking to get advice from your consultant/GP, as they will be able to help you understand what is going on and determine if any further tests are needed. Some find it helpful to write down their concerns/questions ahead of the appointment to have as a reminder.
I hope this is somewhat helpful, and we are here for you if you need some more support around this. Do take care of yourself.
Hi thank you for the reply my next appointment with haemotology is on Jan 11 this will be 3 months since my last appointment. I have had some tests on my leg and they did find damage to nerve ending, I’m just awaiting the written report for this and will update on the findings
Hi @Anncat, that’s good to know you have an appointment booked in. I would say that it’s ok not to wait until your next appointment to air your concerns. If you have the contact details for your team, e.g., a keyworker or Clinical Nurse Specialist, I’d encourage you to call them or to see your GP. And yes, please do update us, we are here for you.
Hello @Anncat and welcome to the forum,I am sorry to hear of your recent health problems ,plus the after effects of covid nasty thing .Its good though that you have a diagnosis of MGUS so now you can be monitored. I was diagnosed with MGUS IgG Kappa in 2020 and have blood tests every 3 months under the guidance of the Haematologist.My MGUS was detected after a blood screen for numbness in my feet (Neuropathy)via the Neurologist and like you say I too have balance issues but luckily not broken any limbs ,(apart from my ribs when i remember now loosing my balance on a walk. .I had a lot of input from the balance Physio at our Hospital so that is something you could ask for.I had a lot of help from the BCUK helpline as@TanyaBlood Cancer UK has suggested and also the Myeloma UK info line 0800 980 3332.They have a lot of info on line www.myeloma.org.uk which has been invaluable for me .
I hope this helps and that you soon feel less overwhelmed.
Keep posting and take care
Hi @Anncat a great big welcome to our forum and it is difficult to follow @TanyaBloodCancerUK and @Bannanacake replies to you.
I just wanted to add my welcome to you and to say I find writing down everything I want to say at your appointment it might include my fears too.
I would say to make sure firstly that your consultant or GP is aware of all your symptoms, the severity of them and the impact on your lifestyle, they sound rotten to me. I think losing your balance is very scary and breaking your wrists and elbow must have been so painful and difficult to function with. Also nausea and diarrhea are horrible.
We also seem to spend a lot of our time waiting on results.
Please let us know how you get on and really look after yourself