@Erica is very sage like. I’d take her advice and stay away from Google. Speaking as a librarian it’s not the least bit reliable!
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Hi AngelaB,
Sorry to hear that you are in pain. It looks like your GP has made the right referrals. Unfortunately, with the nhs in the state it is in, it can take some time for an appointment to come. If you find Zapain is not helping, go back to your GP, and ask if they can speed the your referrals up. Going back to work might not be a bad thing as it might distract you from your pain. I have a lot of msk pain. I have scoliosis and widespread osteoarthritis in addition to mgus and possible sjorgrens. I am being seen by haematology on watch and wait and by rheumatology. I find exercising and stretching helps with my msk pain. I do one to one pilates class every week, do stretching and mobility exercises every day and go for a daily walk.
Best wishes
Helen
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Hi @helenfwallace and @AngelaB I really agree I am a pilates bunny too it has saved me with my painful osteoporosis in my spine and curvature.
I also find that daily fresh air and walking helps my mobility and wellbeing too.
I am just about to do my stretching exercises now.
Look after yourselves
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Hi @Btowers I have been thinking about you, please let us know how you are getting on.
Look after yourself
Thank you for thinking about me Erica.
I was able to get in with specialist to get results on 1 November in the end.
Diagnosed with MGUS after having that bone marrow biopsy. So it was a best-case great result on the day, considering the alternative!
To be honest, at 37 years of age I feel very grateful that this was the diagnosis and metaphorically I feel as if I have dodged a bullet but potentially the war is coming. That is how I perceive MGUS in my early research (rightly or wrongly I am not sure!)
Due to my age it just make sense that it would progress, I mean, it has time to. I might be ill-informed in this statement.
The specialist did say that I am considered low risk at this stage, considering my low protein level in the blood, the ratio of my light chain , with a slight concern being IGA Lamda instead of IGg.
I really appreciate the support in the group and keen to keep in touch, I have another blood test in Jan.
Cheers
Bryan
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Hi @, yes good news if you get what I mean.
I have found just keeping it in the day, if I can, helps me, but you can certainly make plans for the future. Who knows what the future holds for any of us.
I have been on watch and wait (active monitoring) for 18 yrs with another blood cancer (originally 5-10yrs life expectancy) and life is good today.
Look after yourself and enjoy yourself.
Hi Bryan, so glad that you got your results and it is mgus. I guess you will now have regular blood tests. As I understand things it isnt yet understood why some people progress and others not, but research is under way and hopefully answers will be found and new treatments and vaccines developed.
Best wishes
Helen
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Hi everyone. Just diagnosed last week with MGUS with an M Protein of .5g/dl. Had SPEP and IFE blood tests, which I have the results of, but I can’t interpret what kind of MGUS I have and my GP has seemingly taken a laissez-faire attitude of “see you in a year for another blood test.” This is despite the fact that my father was diagnosed with MGUS in 1997 and died in 2009 from MM and Amyloidosis. I can’t help but draw parallels between his history and my situation as he was diagnosed with MGUS at 59 years of age and I am 59 and just diagnosed with MGUS. When I really get in a dark place, I can’t help but think that I could be gone in just 11 short years.
[rant] Inquiring minds (mine) want to know what kind of MGUS it is and what my risk looks like! I don’t think this should be so difficult.
Is it possible to determine myself, from the SPEP and IFE test results? Am I expecting too much from my GP? Am I making a mountain out of a molehill?
Thanks,
Mike
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Hi@mlb,welcome to the forum ,I completely get where you are coming from.
Myeloma.org.uk is a very useful website and their helpline is open Mon -Fri and the BCUK support line is open Sunday morning ,Mon -Fri.
I am sorry to hear that your Dad died from MM and Amyloidosis so its understandable to be worried.
5g/dl is low but you could ask to be tested in 6 months and see ,or earlier if you are worried.
I am older and a Grandma with IgG Kappa , it is rising so I am now tested every 12 weeks. At first it was considered too low to bother till I asked for a retest after 12 months so I would encourage you to talk to another GP ,or the same one and reinforce your concerns.The Nurses on the support lines are very helpful and reassuring.There are also booklets on the BCUK website.
I ask for copies of my blood results and have an MGUS diary which is really good .You are certainly not making a mountain out of a molehill
and it must be a shock for you but there is suppport out there just keep asking away.
Keep posting
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Hi @mlb yes, a great big welcome and I cannot better @Bannanacake response.
You must be in complete shock and the similarities with your fathers diagnosis scary for you.
All I would say is that research has come on in leaps and bounds since 1997 and even 2009. Did you tell your GP about your fathers diagnosis?
If you speak to your GP perhaps use my trick and be pleasantly assertive and tell them your anxiety as well.
Very many of us on here have to learn to live with their condition, that is why we are on watch and wait (active monitoring) to watch for changes in our symptoms and tests.
When I was diagnosed with another blood cancer my prognosis was 5-10 yrs, I am still here nearly 19 yrs later and life is good and treatments have come on leaps and bounds in that time.
Always have a rant on here and please do let us know how you get on.
Also give yourself time for the shock to settle and be ever so kind to yourself.
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Hi @mlb ,
I’m feeling for you as I have also recently been diagnosed with MGUS. I can relate to the anxiety you are feeling and spent a few days in shock. However I have spent the last few weeks reading the forums here and on myeloma UK. I built up a huge list of questions I wanted answers to as the haemotology doctor gave me the diagnosis on a telephone consultation and told me I am low risk. The shock stopped me from asking any questions at the time and so I went into quite a dark place for a while. I contacted them again to see if I could talk to someone and I was given a lovely specialist nurse to talk to who answered my enormous list of questions with patience and compassion. Although I am still getting my head around things, I do feel better for asking my questions, (of which there were many 
) and the support here has been helpful too. Everyone always has kind words of wisdom, even in the face of their own issues. I’m finding that no question is too silly/difficult as there is always someone to support you. I agree with @Erica that sometimes we need to be gently assertive to get the answers we need. Posts here encouraged me to ask again and I’m glad I did. Look after yourself.
Alex
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Hi @mlb,
I first learnt that I had IgM kappa proteins in my blood in December last year. My father died from Myleloma aged 64. I am 63, so I know how scary learning that you have something in your blood that could progress to the same disease that killed one of your parents. The important word is “could”, as not all people with MGUS progress and also we must be mindful that medical treatments and diagnosis has progressed since our parents died. My haematologist plan was to monitor every 3-4 months for 1-2 years. My next appointment is in January, so we shall see what happens next.
I would echo the suggestion of going back to your GP and being politely assertive and ask to be monitored every 3-4 months or so for the first year at least and say that you are worried that you are at increased risk of MM and AL because of your father. I would also ask for your paraprotein to be typed if not already done.
I don’t think you are making a mountain out of a molehill. You have had a nasty shock and are naturally worried.
Helen
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Hi Everyone, I am new to this forum.
I was diagnosed in November with MGUS, after reading the information link sent by my gp I had to ask my gp if there was any link between MGUS and THY3 that i was diagnosed with 12 months ago, he openly admitted he was not 100% sure so contacted my specialist who I am under for my THY3, I have been to see him and he also is not 100% sure but is sending me for a biopsy as a 2 week case. I am worried because there is a history of Hodgkins Lymphoma in my father and his father. Any help much appreciated
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Hi @RonniePR1964 a great big welcome to our forum, it sounds as if you have had a lot of anxiety since November and actually over the last year. I would say that is completely natural.
My mother and her mother died, instantaneously, aged 66 yrs of the same condition so when I reached 66yrs I was waiting, but it never happened and I am now 73yrs old. So I can imagine your feelings.
As for whether blood cancers are hereditary or not or families are pre dispositioned to etc. go on and on.
If you would like to talk to someone the Blood Cancer UK support line is there for you (Bank Hol opening hours apply) but perhaps keep asking your medical team who are best to answer your question, if there is an answer, but obviously it must be an extra anxiety for you.
Please let us know how you get on, look after and be very kind to yourself
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Hi@Ronnie welcome to the forum.I can understand you are wanting answers if there is any connection to MGUS and your family history.My brother had Hodgkins Lymphoma but has survived and is well,an Uncle died from Acute Leukaemia and my Mum was treated for a "blood disorder"a few years before her death.Since my diagnosis of MGUS IgG kappa it has made me think about my Mum and wishing I had known more at the time and asked more questions.On the plus side you will be monitored now having regular blood tests I presume?I am on 12 weekly tests for now .You say you are having a biopsy
Is that for the THY3?
As @Erica has mentioned the BCUK support line is there for support also
Myeloma .org.uk 0800 980 3332
It is a very informative website and there is an MGUS diary available ro record your results.
I find the mind and emotions info very useful on the BCUK website,there are some good breathing exercises which help when things get overwhelming .
Hope that helps and keep posting.
All the best.
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Www.myeloma.org.uk MGUS patient diary
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Hi @RonniePR1964,
Welcome to the forum. I too have MGUS, IgM kappa, and I too wonder about if there is a family link, my father having had multiple myeloma.
I have no idea what THY3 is.
I hope the biopsy goes well.
Helen
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Hi @RonniePR1964,
Welcome to our forum. I am so pleased you have found us. I hope you are keeping okay?
I am very sorry to hear of your recent MGUS diagnosis. This must feel like an awful lot on top of your already existing diagnosis of THY3 & the worries of your families history with HL.
It’s really understandable that you have these concerns and have a few questions about potential links and risk.
Often the link between cancers/pre-cancerous conditions can be very difficult to identify & can be highly complex.
So i am pleased that you have been able to reach out and ask your team about this. Please don’t hesitate to keep that conversation going should you continue to feel worried, as they really will be best placed to help reassure you.
It sounds like you are in good hands with your team Ronnie and that further investigations, like your biopsy, may be the next best step in offering more concrete information.
As others have suggested, our helpline is very much here for you at any point should you prefer to talk anything through- 0808 2080 888.
Do Take Care, Lauran
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No one else in my family has myeloma or blood cancer I’m the first as far as I know.
I asked if it’s genetic and was told no but my kids are at higher risk of developing myeloma and should be tested if they develop any symptoms
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Hi, my name is Ross, 42 year old, fit and healthy, well dad bod lol, I’ll firstly apologies if this isn’t the correct form for this but I’m at a bit of a loss, as to where to try and find information out.
A good few years ago I was diagnosed with Ankylosing Spondylitis/Losis can never remember. For the last 8-12mths, I’ve experienced tingling/pins and needles and numbness predominantly in my hands, joints and feet, I also noticed I had a tendency to jumble words up when reading our aloud from a sheet/screen, along with forgetfulness. and for wherever reason I can’t get enough sleep, no matter how long I sleep for I could go on and on and sleep. I spoke through this with my Occ Health advisor at work who suggested I speak to my GP. He concluded that I should be referred to Neurology(long and short of it, testing for possible MS)
Unfortunately I could not go through with the MRI, currently awaiting a new date, with the help of diazepam lol. The Neurologist took bloods for whatever reason, next thing I’d been referred to Haematology, who carried out further blood tests as I had an abnormal level of paraprotein. I was handed information and MGUS and Myeloma and told to wait on results. The bloods came back satisfactory, I was then referred for a CT scan, which showed no Lyetic Lesions in my bones, but I’ve now to go for an ultrasound to do with bilateral lymph nodes??? I’m possibly not the best at asking direct questions of the Dr’s, but is there any specifics I should be asking, again apologies but this has happened all in a relatively short space of time so my head is spinning a bit.
Thanks In Advance
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