MGUS or SMM

Hi I am new here. I have MGUS which was found incidentally about 15 months ago. My latest bloods have changed a lot and I’m waiting for an urgent referral to haematology. Anyone else have experience with this subject ?

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Hi @Karin a great bug welcome and what a time to be diagnosed during Covid times, you must have felt very isolated and lonely.
It also must be very scary realising that your latest bloods appear to .
have changed a lot and now the horrible waiting for a referral.
You now have your forum family to support you and if you would like to speak to someone the Blood Cancer UK support line is there for you.
Please keep us updated and I look forward to hearing more about you.

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Thank you for the welcome :hugs:

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Hello @Karin and as @Erica says welcome.I have MGUS and was diagnosed last year and am on watch and wait blood tests every 12 weeks as advised by the Haematologist.My MGUS is IGg and the levels rose a lot last year but the rest of my bloods are ok .It has caused me a lot if anxiety waiting and wondering and I am sorry to hear about your urgent referral but at the same time its a good thing so you can get checked out.BCUK has a good info booklet on MGUS ,you’ll find it on their web site ,also Myeloma UK have more information,and are also very helpful .I hope this helps you feel less alone and this forum is very supportive ,I will look forward to how you are doing.
Bannanacake

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Thank you. Yes I have IgG kappa and the kappa free light chain has risen to 119g/L the kappa Lambda ratio is 5.88. I don’t know any of the other results at present. Unfortunately the gp didn’t refer correctly and it hasn’t been received so I have to continue the wait for an appointment but these things happen. Thank you for the support x

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Yes @Karin thats the worst the referral being delayed when you’ve got all hyped up.Ive discovered there are many facets to MGUS mine is Kappa too ,first time the light chain test was done it wasnt showing anything so I gather its not repeated, maybe i should ask ,but its all to do with light chain /heavy chain .Its an interesting diagram to look at ! I got an MGUS diary from Myeloma UK so I write my results in that its handy to see any changes and also my GP checks me out for any other changes so Im being kept an eye on.If you give the BCUK helpline a call or Myeloma UK they will help you with results. In the meantime its a case of finding something to take your mind of it ,easier said than done I know.
Take care
Bannanacake

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Hello @Karin and welcome to the forum. I can see @Bannanacake has already shared their experiences which must be so helpful and shows the values of the forum.
Please keep us updated X

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Hi@Karin,just wondered how you were doing after your re refferal to the Haematogist ? I hope you had some reassuring news.I am speaking to my Neurologist tomorrow.I was discharged 2 years ago it was as a result of a test she did that I first became aware of MGUS,it was very low so nothing to bother about ,that was then .Ive been waiting 6 months .I am a lot wiser now
So im looking forward to the conversation.(telephone) .
All the best .:blush:
Bannanacake

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oh, @Bannanacake please let us know how you get on tomorrow, I expect you have lots of questions.
I always get anxious before any medical interactions and my mind goes blank.
Yes @Karin how are you getting on?
Look after yourselves

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Hi@Erica,thank you ,I know what you mean ,I have made lots of notes but its difficult trying to hear on the phone and read your stuff,plus explain how you are ,I always feel as though Im shouting at someone on another planet ! It will be interesting.
I have a knitting evening planned.Yes good advice to look after ourselves and you too :blush:
Bannanacake

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Hello again

I am awaiting X-rays on my upper arms and right thigh. Haematologist not seen me but advised GP to do X-rays. They said he wasn’t unduly concerned at this point re my blood results but to repeat them in a couple of months. I have now had access to all the blood results and it appears I have moved from low intermediate MGUS to high intermediate. I’m glad they are watching and somewhat relieved!
I hope all goes well with the neurologist and thank you for checking in on me :blush: x

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Hello @Karin,thank you for posting
I’m glad to hear you are having some investigations ,yes it is a releif to know you are being "watched"and you know where you are with that.Im not sure how it will go with the Neurologist ,I have neuropathy but its thought to be from bone spurs pressing on the nerves and not the MGUS,IGg doesnt usually cause that so it will be interesting so thank you @Karin
,I hope you dont have too long to wait for your x-ray.
Bannanacake

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Please let us know how you get on :blush:

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Is your hospital still not doing face to face appointments

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It is good to know they are keeping an eye on you. Regular checkups always reassure. We will wait to hear how you get on with your X-rays x

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Hi@Nichola75,must not be doing face to face since latest Omicron Im just presuming as I had face to face for outstanding Ortho and ENT app,last November and early Jan .Its so much easier in person but its better than not ,although my husband is having person Physio appointment.
Thank you :blush:
Bannanacake

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Interesting how hospitals do it differently. I started back to face to face appointments 6 months ago, following on from video calls. It is better to face. I hope your hospital gets back to these soon.

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Morning, firstly some background. 2015 i was diagnosed with a rare but serious illness called Guillain barre syndrome also mutifocal motor neuropathy, on these illnesses they found a heart problem called LBBB, essential tremor in both hands. So been feeling weaker than normal weakness lower back pain with neck pains and hips ,chest dull ache. So blood tests performed, a Doctor rang me who referred me to a specialist, who got back to me saying tell Kevin he got MGUS. Thats it wot type etc nothing. Got cervical neck xrays today ,plus mri soon .what with having a low immune system with GBS, i am fretting over mgus quickly going to mutiple myeloma? Regards all

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Hi Kevin1,firstly I am sorry to hear of all your health issues and secondly I can relate to where you are coming from .I presume you can talk to your Specialist or GP about your MGUS and what that would mean for you. It depends what the name of your MGUS is and at what level which would explain what to expect .I have MGUS IGg Kappa which was found 2 years ago and diagnosed last September ,the level is increasing so I have blood tests every 12 weeks .Its called "watch and wait."re the Guillian Barre that was flagged up for me a few years ago as I developed neuropathy ,I was reffered to a Neurologist and I have sensory axonal neuropathy, had the usual MRI snd nerve tests. Myeloma UK are a good source of support and information on MGUS as well as BCUK ,they both have fact sheets and a support line which will help you.Sounds like it s such a lot for you right now and Im glad you have found the forum to share your concerns .
Im wishing you well for your MRI please try to talk to someone meantime .
All the best
Bannanacake

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Hi @Kevin1 a great big welcome to our forum, gosh you really have gone through the mill and you must feel so fearful, lonely and anxious, especially in Covid times.
It sounds as if you have a lot of medical questions.
I have found it useful to write down my fears, questions, symptoms, medical history, family medical histories, medications, allergies etc etc. as I need to cover everything at appointments and I am asked the same questions again and again.
I have also found that consultants are experts in their own areas but it is my GP that looks at me more holistically.
There are no silly questions.
We are here as a support and if you would like to speak to someone the Blood Cancer UK support line is there for you.
Look after yourself and please keep posting

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