Following blood tests for something else 6/7 years ago I was diagnosed with MGUS and immediately discharged from the hospital. They said I didn’t need to be monitored. Does this make any sense? I feel quite vulnerable (not COVID-wise particularly but generally).
Hi @NanaNana perhaps a contact with your GP might be in order as it is a long while since you were discharged from the hospital.
It might be worth writing down all the questions you would like to ask, any symptoms you have etc. and perhaps say that you would like a blood test at the very least.
If you would like to speak to someone the Blood Cancer UK is there for you although they will be closed over the Bank Holidays.
Look after yourself and let us know how you go.
Thanks Erica. Yes, I should ask the GP. I have no symptoms but every so often get worried that if something was changing I wouldn’t know.
Hi @NanaNana. I would feel exactly the same. @Erica gives great advice, especially writing down all off your questions. The Blood Cancer UK helpline might be able to assist with what you need to ask as well. Please let us know how you get on. I hope your mind is put at rest soon x
Dear @NanaNana, I am very sorry to hear you are feeling vulnerable at this time. Sometimes MGUS patients are discharged to their GP once diagnosed and then blood tests can be taken if any symptoms occur. Your GP should have guidelines around this. Here is our information on MGUS Monoclonal gammopathy of undetermined significance (MGUS) | Blood Cancer UK and please do call the Support Services team if you would like to talk through your worries Blood cancer information and support by phone and email | Blood Cancer UK Take care Gemma
Hello @nana nana,I was diagnosed with MGUS in the Summer after a rise in my paraprotein level,this was discovered on a screening test Initially I only had a low level ,my GP wrote to the Haematologist who said it was extremely low so no further investigations needed . However as I also had peripheral neuropathy I asked my GP to be retested after a year which showed a rise,my GP then wrote again the haematologist who advised watch and wait every 12 weeks and gave other guidelines which was reassuring. Its debatable if the paraprotein is causing the neuropathy as I also have narrowing of my spine with arthritic changes.I understand usually you don’t have symptoms for MGUS in the early stages so it is a good idea to read the info from Blood Cancer and take your?to the GP.Good luck and I hope you can feel reassured.
I have now had relevant blood tests, ordered by my GP, and they are “normal”. He is happy to repeat the tests every 6 months so I feel happier now. Are there any particular details I should be asking about? “Normal” is all very well but I’d like to understand more. When I asked the GP to explain, he was talking about ESR and haemoglobin but I didn’t really understand a lot of what he was saying (his strong accent over the phone makes it difficult).
That is brilliant news @NanaNana, normal is good.
I will copy your post to @GemmaBloodCancerUK as I believe she is considering how to best de-mystify blood test results.
A great big sigh of relief and a celebration is in order I think, take lots of care of yourself
Hi @NanaNana,thats good to hear that youre blood results are “normal” and its especially good you are being tested evey 6 months to keep an eye on them. The one which I expect was done would be a serum protein test to monitor the rise in the paraprotein level.I ask for a copy of my blood test results then I can see for myself .The MGUS info sheet is helpfull to read and last week @GemmaBloodCancerUK answered questions on watch and wait and put links on the forum.
Its also important to notice if yiu develop any new symptoms.
I am sure @GemmaBloodCancerUK
Will be happy to talk it through but also if you look on line Myeloma Uk have useful info on MGUS and you can call their helpline for info.
Its good to be informed.
Hello @NanaNana, I am so glad to hear that your blood counts are ‘normal’ and you have a plan for repeating them. What the GP and you are looking for is stability and no significant changes in the blood count levels. I wonder if these resources from Myeloma UK would help about MGUS, along with the Blood Cancer UK information I think they are useful for education and a guide to take back to your GP if you needed, MGUS information sheet: https://www.myeloma.org.uk/wp-content/uploads/2018/03/Myeloma-UK-MGUS-Infosheet.pdf and MGUS patient diary https://www.myeloma.org.uk/wp-content/uploads/2022/01/Myeloma-UK-MGUS-Diary.pdf. Of course if you have any other questions do message or call the Support Services Team How to contact Blood Cancer UK | Blood Cancer UK. Take care Gemma