Hi@Joy and welcome to the forum from me ,I am glad @Tanya asked the question if you had been reffered to a Haematologist, I was going to ask if the GP had told you what the name of your MGUS was that is a start and if you read the MGUS leaflet it will tell you there are different paraproteins, mine is IgG,its all very confusing I know.
When I was first diagnosed my GP wrote to the Haematologist and as I had only a very low level she said no more tests 
, however after a year I asked for another test and after the 3rd test my GP wrote again as it had risen and the advice was to keep on testing ,so I get tested every 12 weeks for now. If you give the BCUK support line they are very helpfull and supportive and can talk you through any queries you have so that you can go back to your GP and get better answers ,yiu are also entitled to ask for a copy of your blood test results,although being tested in 6 months sounds like a good plan but you need to know your
Levels and take it from there. Myeloma UK helpline are also very good .It will help you settle the more info you have .Its good that you are posting here to get the support you need, as@Erica says and me too so all the best and keep posting,you have a lot on with your caring role and gastro issues too.
Bannanacake
I recently had radiotherapy and currently having hormone therapy for Prostate cancer. I have just been diagnosed with MGUS. I had blood tests six month and one month ago. My immunoglobulin s G and M are high. My kappa Score is over 100. The light chains ratio is also high at 3.01. But advice letter from haematologist says this ratio should be over 7 before referral. I will be tested again in six months time. But the figures have increased. I have also had balance problems and inreased number of red spots on my chest. I fear it already progressed and should do more than just wait.
Good morning @AP29 welcome to the forum ,I am sorry to hear going through it just now with the treatment for prostate cancer and your diagnosis of MGUS.It sounds as if your GP has already written to the Haematologist and yes as in my case they wouldnt see me till the paraprotein level IgG is over 20g/l ,how is your 100 measured?im not sure if your results come back in g/ls ,if so fo you meant 10.00 g/l you say 100 so im a bit confused .Also it depends how your haemoglobin and other test result are plus other health issues.Can you ask your GP about the red spots it may be a side effect of your treatment ,also ask about your balance problems which could be an ear infection if its a new thing.Its hard when you are diagnosed with MGUS not to worry so asking for guidance is the best thing ,BCUK have a support helpline, plus please talk to your GP and keep posting .All the best
Bannanacake
Hi Bannanacake
Thanks for the encouragement. The kappa value is 118.5mg/L. My IgG has moved from 21.7 to23.5. The ratio of of Light chains is 3.01 but needs to also be 7
For referral. I will follow up re spots. Thanks
Hi @AP29 thank you for your reply and explanation .Sounds like your light chain results are the marker and I can understand your concern,wonder if you could get a retest in 3 months ?,I am on 12 weekly testing sounds like it depends on the guidance.I also got a lot of support and guidance from Myeloma UK they sent me an MGUS diary so I csn record my results Re your balance I saw a balance Physio who helped me a lot ,via ENT so that may apply to you?,I also have sensory neuropathy which I manage OK following exercise and advice.Good luck with the spots,if it ain’t one thing its another!.All the best.
Bannanacake
Hi @AP29 a great big welcome to our forum and @Bannanacake has certainly shown the value of our forum.
We are such complex beings it is often difficult to attribute a symptom to the right condition, existing or new. I always want to link it to my blood condition of course. However I certainly believe in always getting new symptoms checked out.
I was struck by how much you have had going on medically, I cannot imagine what it has been like for you emotionally, medically, physically, practically etc, you must be really exhausted and your batteries depleted.
Please take care of yourself and be kind to yourself.
I look forward to hearing more about you.
Many thanks Erica yes it been a challenging time. Boot helped by my father passing away two years ago and my father in law with Prostate cancer and my sister in law just finishing several months of chemotherapy for breast cancer
Hi @AP29 I am speechless.
Look after yourself
Hi @AP29 I have been thinking about you and I just wondered how are you are doing?
Hi Erica
Ian doing much better. I see that my paraproteins were 3.3. Which appears quite away off the 30 level. Back pain slightly improve and I have booked a physiotherapist session tomorrow. I attended a Prostate cancer support group last week which was informative but interesting the specialist nurse said she had a few patients with Prostate cancer and MGUS which was interesting.
Thanks for checking on me
Andrew
Hi, I have recently been diagnosed with MGUS or a “MGUS-like” condition. It is igM type and I think it is a kappa protein. I was referred to haematology and the first three blood tests said that the protein was too small to quantify. However, my GP recently ran some blood tests because I have been suffering from Muscular Skeletal Chest Pain and this time the paraproteins are measurable. I emailed a copy of the test results to the hospital consultant and booked a GP appointment. That seemed the best thing to do. I am quite anxious about this change and the whole MGUS thing generally. Should I expect to have further tests and scans now? I am also ANA positive and the haematologist thought the whole paraprotein thing could be caused by Sjogren’s Syndrome or similar connective tissue condition. However, my father died from Multiple Myeloma at a similar age to myself.
What can I do about feeling anxious? Suggestions welcome.
At my last video consultation with the Haematologist it was suggested I should check my lymph nodes regularly. I know I need to be searching for non painful lumps in areas where lymph nodes are but are not really confident that I am doing this right. I have asked at my GP surgery if a nurse could show me how to do it, but they said they couldnt help. Any suggestions ?
Thank you.
Hi @helenfwallace. I completely understand how anxious you must be feeling at the moment. It must be so unsettling when things change. I have lymphoma and am on active monitoring. Nothing has changed over the last few years but I’m constantly checking.
I think it’s only natural that you feel anxious. Have you got a clinical nurse you could contact directly as they will be able to answer your questions about your next steps and perhaps this might put you mind at rest a little? Looking after our mental well-being can be such a challenge can’t it! Stopping all those thoughts swimming around is a tough one. Is there anything that eases your anxiety or helps you to relax? For me it’s swimming.
I found this video quite useful on how to check lymph nodes. However @GemmaBloodCancerUK Or @TanyaBloodCancerUK might have additional information that may help.
I’m the meantime please keep posting and let us know what your GP says.
Sending lots of special wishes 
Thank you for your comments.
No clinical nurse. I suppose that is because all the consultations have been by video call.
Hello there @helenfwallace, I can understand your anxiety but I feel very confident you have taken all the right steps to ensure you are being reviewed by the right people. In terms of future scans, I would suggest that the Haematology team will guide you (and your GP) if needed and this is also dependent on whether your skeletal pain is constant or has it improved? If this is constant pain then you should ask your GP is consider investigations.
This video is great, thank you @Nichola75, so please just follow this and if there are any nodes you are unsure of do report back to the GP or Haematologist who can arrange an examination, it is not all your responsibility but alerting the team to anything unusual is helpful.
Have you had any further bloods taken since those that you emailed to Haematology? I would suggest Haematology will guied you if any further bloods are needed and when best to take them.
It must be a very stressful time but please be reassured that the correct specialist are aware and will be supporting you throughout this.
Have you seen the information from Myeloma UK on MUGS, if not they are below if you need:
- List item
Kind regards and do call us if you need support: How to contact Blood Cancer UK | Blood Cancer UK
Hi Gemma, thank you for your input and links. All very helpful.
MSK symptoms are worsening, but there are long term problems with scoliosis and osteoarthritis and calcific tendonitis in both shoulders which flare and receed, making the picture very confusing.
Thanks
Helen
Hello@helenfwallace and welcome to the forum .I can relate to what you are saying and understand what you are going through at the moment .Its great that @Nichola75 posted the video and @GemmaBloodCancerUK has sent you the links for Myeloma UK.I was diagnosed with MGUS in 2020 only a small paraprotein IgG kappa but it has increased and on advice from the Haematologist I am now on blood tests every 12 weeks ,if it settles that will be reduced.If yours is only small at the minute I guess it may be a similar thing but its good its been detected and you have e mailed for an explanation. The MGUS diary from Myeloma UK is helpful and I would encourage you to ask for print outs or e mail copies of your blood results,then you will know where you are.As you say you have other inflammatory things going on which is interesting as my paraprotein was derected after I developed neuropathy from arthritis in my spine and I have arthritis in my hands .I am sorry to hear your Father died of Multiple Myeloma and that will be causing you a lot if anxiety but from what I hear and read MM is very treatable today and since MGUS is watched more closely now any thing untoward will be seen and acted on so that is a plus I hope for you.Re what to do about your anxiety there are some good meditations on the BCUK website and if you can exercise that will help shift your focus on to other things
as @Nichola75 says swimming for her.I get out for a walk every day plus I am a knitter and enjoy being creative with textiles,reading ,music .What are your interests@helenfwallace?I am a Grandma long distance but there is always Whats App or Skype .Making a list of what to ask your GP and download the info from Myeloma Uk to read before your appointmemt will help .The GP may just monitor your paraprotein with advice from the Haematologist ,my GP also checked me over but relies on me noticing any changes.
I am wishing you all the best and keep posting .
Bannanacake
Hi Bannanacake,
Thank you for all your comments.
I tried to respond via email but it didnt work-ah the wonders of modern technology.
I enjoy walking, gardening, family history, one to one pilates and blow a few notes on a recorder (pity my neighbours!). I used to swim and play flute but developped calcific tendonitis in both shoulders.
Generally MSK problems seem to getting worse. For me it is a complicated picture. I have scoliosis, osteoarthritis and i suppose the usual age related degeneration of the body. I too have hand arthritis and was given some good exercises by a hand therapist. I get some strange buzzy sensations in my hands on waking up of short duration. I have had two failed attempts of getting treatment on the NHS-so I have largely given up. I suppose what worries me is confusing pain from osteoarthritis with pain from myeloma. This is what happened with my father. However I was told that igM paraprotein is less likely to progress to Myeloma.
Hi @helenfwallace I hope you are ok and can understand your worry. I never had a MGUS phase (at least not one that ever got detected), I was diagnosed with Multiple Myeloma four years ago. The chemo wasn’t too bad, the stem cell transplant a bit of a chore but I’m doin ok and have live three years of very normal life (if you exclude the lockdowns!). I hope that you don’t progress to Myeloma but as I and many others can testify, you can still get a lot out of life. I’m sorry it wasn’t the case for your father. Treatments in this field are improving all of the time and that can only be a benefit to people like us. Keep us up to date with how you are getting on.
Hi Franko,
Thank you for your message of support. Sorry to hear that you have Myeloma, but glad that you are living well with it. My father died in 1988. I hope that treatments and outcomes are much better today.
Best wishes
Helen
Hi@helenfwallace.A diagnosis of MGUS is guaranteed to set of a tail spin of if buts and maybes.I hope when you see your GP you can ask any questions.Thank you for sharing all your activities ,walking is great for shifting the gloom I find.Its hard not to connect one thing with another ,the mind is good at that,arthritic pain flares up and down.Versus arthritis is a great website for support. Yes IgM is a different paraprotein to IgG which is the myeloma one but main thing is now to be monitored and get support from Myeloma UK ,this forum,and ,BCUK.The best thing is to get copies of your results and the MGUS diary is very helpful.