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I am 47 years old and a month ago I was diagnosed with MGUS (or Paraproteinemia as my GP called it). My paraprotein level is 13.5 g/l, which I appreciate is relatively low compared to others. My plasma viscosity was also significantly raised (although on a subsequent test it had gone back to normal). My GP seems very unconcerned with my results to the point she said that 5% of her patients have MGUS but it is nothing to worry about. I on the other hand am very worried about it. I have done lots of research and read lots of things that have in some cases worried me but in others have comforted me . I have even had a meeting with the local Haematology<span style=”line-height: 1.5;”> Support Nurse who oddly already had my details in the system, even though I have not been formally referred to Haematology yet. Although reassuring she seemed to be more concerned than my GP so I am completely confused and don’t know who to believe. My GP has arranged for me to have a Dexa Scan (although she flippantly informed me it will take ages for me to get an appointment). My GP also said she would be redoing my blood test again in July. No mention has been made of a referral to a specialist or a bone marrow biopsy. The reason I had a blood test in the first place was because I have been suffering </span>excruciating<span style=”line-height: 1.5;”> bone pain and headaches. Any advice at this stage would be hugely appreciated as I have no frame of reference or idea of what to expect. </span>
Hello jaylo
Welcome to the forum.
Try not to worry too much. You can be in the MGUS phase for years and some never become active.
I was MGUS for at least 4 years, with a paraprotein of around 30 and a bone marrow of less than 5%. It wasn’t till it went up significantly with a bone marrow above 10% that I was diagnosed as Myeloma. During the MGUS phase I was monitored with blood test every 3 months.
Hope this helps you a little. Ask your GP for a haematology referral if you’re very worried.
Best wishes susie
Hi jaylo, I think that if I was in your shoes I would ask your GP to refer you to the haematology department, I would much prefer to be under the care of a consultant than a GP. Nothing against GP’s mine is a treasure but if anything goes wrong you have immediate access to the treatments available, plus, the consultants and the specialist nurses know you.
Regards
5ony F
Hi Susie and Tony, thank you both so much for taking the time to reply to my post. I do think I would feel better once I have spoken to a Haematologist, rather than just relying on my GP. I really appreciate your advice and I do hope you are both keeping well. All the best, Jayne
Hi jaylo, I reread your first post and realised you are new to myeloma. Sorry to have to welcome you here, it’s a place that we don’t want to be! You must have noticed that there is a wealth of experience here and everyone is willing to help. You may find that there is also a myeloma support group in your area, worth giving Myeloma UK a call. Hope you do get to see a haematologist, with the greatest of respect to your GP it is a known fact that most gp’s only ever come across one case of myeloma in their career, so would not necessarily know the full facts re treatments etc. I have only seen my GP once/ twice in the past 3 years. All of my appointments, treatments etc etc are with the hospital, only time I visit my surgery is for blood tests, easier than getting to the hospital.
Wish you the best of luck with all that you do.
Regards
TonyF
Hi Tony, thank you so much for getting back to me. I have been invited to the next Support Group meeting taking place at the beginning of May so I will go along. I am also seeing my GP again tomorrow to talk things through so will see what he has to say. I have a feeling he will want to wait until my next blood test result in July to see if I have reached the “trigger” point of 15 g/l (which appears to be the referral criteria for our area). Unfortunately I live in a county that has a very high elderly population so the local Trust have devised a system where anyone presenting with MGUS under 15 g/l is put on a spreadsheet and monitored regularly. They are only referred once they reach 15 g/l. The sad reality is if I lived somewhere else (such as East Kent or Leicestershire) because of my age I would be referred automatically. But I will see what tomorrow brings. Thanks again for your support and kind words, it is very much appreciated. Best wishes, Jayne xx
I’m sorry to her about your experience jaylo47 and it does appear that there is a much better set up in Leicestershire as you say, where I live.
The benefit of being referred to a specialist is that you’ll enter a regular regime of tests which are then monitored by an expert. I started off with a whole body skeletal scan and bone marrow biopsy. My last results had improved so much that I was thinking I might get discharged but today I discovered that my paraproteins have gone up to 10.3 (lower than your figure) and it seems to have provoked a whole new set of tests with a review in a month. Apparently this was because my increase had been over 5, the individual figure itself not necessarily being as important as the rate of increase. Of course you can only determine that by regular tests.
I’m not unduly concerned as my pp’s could go down as easily as they went up but that’s easy for me to say because I couldn’t possibly think the hospital I visit could do more. Considering that you have bone pain you may possibly be a higher risk than I am. My test details and experience are in another post on the MGUS part of the forum if you want to see my results.
I’m an ordinary NHS patient and no one special so this must be their standard protocol. Knowing that you’re in good hands and receiving the best care helps take away a lot of the stress. MGUS test results can fluctuate a lot, making it all a roller coaster ride at the best of times.
I’m not trying to cause you stress by telling you my experience but trying to give you an idea how it is handled by some other areas.
Take care.
Thanks Graham, for your response. I really appreciate you taking the time to share your experience with me and don’t worry, you haven’t stressed me out at all! I know that my experience is very different to that of someone else in a similar situation, purely because of my postcode. That’s the most frustrating bit about it. I have since had a further blood test which has shown a rise in my paraprotein levels and my IgG level is 19.4 g/l. I know from my research that if I lived in Leicestershire or Derby that would be enough to send me to see a consultant, but here in Devon it is not. I think perhaps I need to be a little more assertive with my GP.
Wishing you all the best and hoping you are keeping well.
Just to clarify something, in MGUS paraproteins are a marker for all patients and the kappa/lambda ratio is also relevant to everyone. I have had a kidney removed and I pay particular attention to the eGFR figure which is a measure of kidney efficiency because that is an organ that can become affected.
On your tests IgG relates to one particular free light chain which is the one particularly affected in my MGUS. It is useful to check whether yours is the same as mine or something different. There are several different types and are all are measured in the blood test and you just have to see which is largest on your test report to know which one applies to you. When you know which one of yours is particular to you that will be the figure to look at each time you get a test. Having said that your FLC’s may not be affected significantly.
You could try asking your GP for a copy of the blood test results but, even if he refuses you can still get them by making what is called a Subject Access Request and it’ll cost just £10. It can take a while but at least it gives you some sense of empowerment having something on paper.
I always aim to make myself the most pleasant and charming patient a doctor/patient has had that day, but I also make sure they know I am not a helpless and clueless victim.
I have managed to find the North Devon NHS referral guidelines
http://www.northdevonhealth.nhs.uk/wp-content/uploads/2014/06/MGUS.pdf
Obviously those guidelines can’t possibly be anything like those in Leicestershire and it seems strange that they haven’t included bone pain as a risk factor.
It does put greater emphasis on your blood results and knowing what they are and how your PP levels are changing.
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