I have recently been diagnosed with Monoclonal gammopathy of unknown significance (MGUS) although my gp knew about it for about 15 months without informing me. I only found out when I visited my GP for an unrelated condition and she handed me a letter haematologist had sent to Gp. Not a patient info letter tho. I have found out about Monoclonal gammopathy of unknown significance (MGUS) from internet.
Since then I have heard nothing and have had to contact surgery for regular bloods myself. Just wondering what should happen now. Do I need to see a haematologist or have counselling? Should by GP practice be monitoring me?
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Hi @Florence74 welcome to our forum and it is obviously a worrying, confusing time for you and you must have had a great shock.
Perhaps it would help you to contact your GP for a face to face appointment.
I find it helps me to write down all the questions I would like answers to first so I stick to the point.
Obviously you have the questions you have documented in your post and you might have some others.
If you do not get satisfactory answers you could always go to the practice manager next.
You might want a referral to a haematologist or be happier under GP care, personal choice.
Very personally I am happy to have my regular blood tests done at my GP surgery, as you are currently, as it is more local than my hospital.
Personally I book those myself, as opposed to the surgery contacting me, I do not know the usual procedure is.
If you feel that you would like or need counselling of some sort your GP might be able to let you know about local services.
I find, again personally, if I have questions or unresolved issues I then take the initiative and feel better for sorting it out.
As you gather I am not a medical person and this is a personal reply.
The Blood Cancer UK support line is there for you on 0808 2080 888
Please do let us know how you get on and really look after yourself…
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Hi,
I know a little about Monoclonal gammopathy of unknown significance (MGUS).
It means you have para protine in your blood.
For many people thats all it will be, but the drs will regularly monitor your blood to check that it doesnt increase.
Im not sure if that will be the hospital or gp that will do that. Or how often, so thats what you need to ask your gp. How regularly you need your blood checked. And then you can stay on top of that.
However i would have thought you should have an appointment with a haemotologist at the hospital, so that they can explain it all to you.
It must be scary hearing that, but its really good that you know, as if it does increase in the future it will cause less problems than if you didnt know about it.
Take care
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Hi @Florence74.
I can see you have already had two great replies and I can only echo what they say.
I would definitely suggest making a GP appointment and think it would be really helpful for you to ring the support line before the appointment so that they can advise on next steps and questions to ask etc.
It must have been a shock finding out the way you did and it shouldn’t have happened that way. You may well need some support as time goes on.
Please keep us updated on how you are doing.
Take care.
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Thankyou for all your advice. It is much appreciated.
I am going to make a face to face with my GP, not an easy job in itself tho.
I am a retired healthcare professional so feel as if maybe I should have been more on the ball myself. Thankyou again.
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