Hi,
Im new to this so please forgive me if i have posted in the wrong forum.
I only have monoclonal gammopathy of unknown significance (MGUS) now which was still very stable at my last review. So much so, i only need annual checks now.
I have been concerned more recently however because i have had 3 nasty viruses in the last 2 months. This last one is not going. I do suffer with fibromyalgia so I rely on pain relief daily. I have been very good at keeping these to a minimum until more recently because my pain has become steadily worse.
I am not sure if im being paranoid or if im justified asking for an earlier review.
I don’t like to bother my GP but i do want to know why im getting all these illnesses, and reassure myself that the monoclonal gammopathy of unknown significance (MGUS) is not developing.
Thanks in advance
RavenSong
Hi @RavenSong, welcome to the forum! Thanks for posting.
It’s so understandable that you’re wanting an earlier review due to the recent viruses you’ve had. When was your last review?
We’d really encourage you to contact your healthcare team and explain what you’ve been experiencing to them, and ask if they can see you earlier. Our MGUS factsheet may facilitate your conversation around this, as page 6-7 explains that:
You should always check with your doctor if you experience any new symptoms, including:
– constant pain, which may be in the bones, in one area
(back, ribs, hip or pelvis) for no apparent reason
– breathlessness
– extreme tiredness (fatigue)
– recurring infections.
MGUS-monoclonal-gammopathy-of-undetermined-significance-fact-sheet-MGUS-0717.pdf (shopify.com)
Do feel free to give our support line a call if you want to chat any of this through, on 0808 2080 888. Take care, Alice
Hi @RavenSong a great big welcome to our forum and @Alice_BloodCancerUK has given you a great response.
The only thing I would add is to, if you are concerned, perhaps it might be worth getting your fibromyalgia checked out as well as your pain has been becoming steadily worse. I am not a medical person…
I find when I get one nasty virus it really runs me down and therefore I am more susceptible to the 2nd etc. etc. and it takes me a lot longer to build back up each time.
I got a nasty non Covid bug at Christmas and I am just about over it now and I am not a patient patient !!
Take lots of special care of yourself and now you have found us please keep posting
Hi@Ravensong,
Welcome to the forum.
I dont think you are being paranoid at all. It is only natural to worry when you have had a bout of infections, one after the other and have MGUS and now you have a long wait until your next review with your Haematologist . I have MGUS too, and my bloods have been fairly stable and I am really scared that I might be moved annual check ups. Currently mine are four monthly. I got really worried when I caught Covid and it took me an awful long time to test negative. I am now worried about my recent diagnosis of osteoporosis and if that means that the mgus has progressed or is it coincidental.
To me, making an appointment with your GP to discuss your concerns and worries is sensible thing to do. Do remind them that you have MGUS and Fibromyalgia and when your next haematology appointment is, as GP’s don’t always read through the medical notes beforehand.
Do let us know how you get on
Best wishes
Helen
Hi Alice,
Thank you for the warm welcome and for such an informative reply.
I called my GP and got to speak to a locum. He had not heard of MGUS and I had to explain it to him. Thank you for your information about conversations, that will be really helpful next time.
Anyway, I managed to request another blood test though so i’m sure any concerns will be picked up in that.
My last review was August 2022 and all was stable at that point.
I’ve had this latest infection for 10 days now with only a week’s break from the last one so I think something is definitely going on.
I am more breathless and constantly tired but i put the latter down to my fibro and the infections i keep getting.
Thank you again for all your help.
Best wishes
RavenSong
Thanks for the update! Very glad to hear you’ve got another blood test booked in! Really hope all goes well.
Hi @Erica
Thank you. I have been looking at my fibromyalgia also as i felt the same.
The main thing that concerned me is I’ve had fibromyalgia for over 20 years and never had infections like this before.
Still, im sure my blood tests will show any concerns.
Best wishes
RavenSong
Thanks @helenfwallace
My consultant did say at my last review, that i could see him sooner than yearly if i was concerned. Perhaps your consultant could offer the same?
BW
RavenSong
Hi @ Ravensong,
Perhaps you should take your consultant up on his offer? Good that you got a blood test organised rather poor that the locum hadnt heard of MGUS.
Best wishes
Helen
Hi @helenfwallace,
Thanks for your reply.
I contacted my GP again and spoke to another this time. The locum hadn’t requested my blood tests in the end. To be fair, the 2nd GP was very good.
My consultant has kindly posted out blood forms to me so I aim to get these done on Tuesday.
Thank you x
BW
RavenSong
Hi@Ravensong,welcome to the forum.
I have been relistening to this again and posting should you find it helpful.
Good that you have an earlier appountment for your blood tests
And @Alice_BloodCancerUK @Erica @helenfwallace also replied to you.Digital Infoday Session: MGUS: An Overview - YouTube
All the best
Thankyou for posting @Bannanacake . I was unaware of this youtube link. I’ll give it a watch.
Hope you are on the mend. I got Shingles in my twenties and found it horribly painful.
Helen
Hi @Ravensong ,
I am glad that you are getting your blood tests done.
Helen
Hi @Bannanacake,
I watched the video and it is excellent. Thank you once again for posting link.
Helen