Hi Erica, thank you for your message. I have asked the hematology team if they could speed up my planned consultation. I shall have a privet MRI done this week. And the hematologist will ring me this Tuesday. So far I had one face to face appointment.
I am in constant pain now and feel really scared. I will write more once I have my results.
I had blood tests done on Friday. So shall know more. My pain maybe related to Myeloma or something else maybe growing there.
Thank you again for help.
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Hello Everyone,
I had some blood test done and my Creatinine is above the norm now and GFR levels is below the norm. Which looks worrying and few months ago it was much lower. Based on my pain I either have something growing in my ribs/ kidney ( due to Myeloma or something else) or have a kidney disease.
I am quite emotional. I am not sure if I will have an MRI with contrast or not now with these results.
A hematologists should ring me tomorrow. I wonder what he will suggest.
It looks like my monoclonal gammopathy of unknown significance (MGUS) is going in the wrong direction. My son is only 5. I am scared now. Until now I was hoping that I could have some years ahead in this monoclonal gammopathy of unknown significance (MGUS) state.
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Hi @Anna82 you write so clearly in your post so perhaps write your questions and fears down and make sure you address them all when you get the call tomorrow and be pleasantly assertive.
You say you are quite emotional which shows how much answers to your questions and fears mean to you.
Please do let us know how you get on.
Be kind to yourself
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Hi @Anna82
I had renal impairment at diagnosis in 2017
My light chains were 1400
I don’t have any kidney numbers that I can give you from that time
Myeloma can cause kidney problems
When lesions are present the broken down calcium from bones are filtered through the kidneys along with light chains
Our kidneys are doing a lot of work behind the scenes
If you can take a positive from this with monoclonal gammopathy of unknown significance (MGUS) you are monitored and hopefully can start treatment as soon as it’s required
I had no idea I had anything until admitted as an emergency for a gall bladder infection and i wasn’t in a good way when diagnosed although I felt ok
My myeloma had been busy for 6-8 months before it was found
My kids were my goal to getting through treatment and out the other end my inspiration
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Hi Anna,
Sorry I’ve not logged in for a while, I have just seen your reply now, I’m so sorry to hear you get poorly alot as well. In the last 6 months I have been on 4 lots of antibiotics, 2 for chest infections (that I get regularly) & 2 lots for UTI’s which you said you suffer from also. I suffer with my health more times than I’m ’feeling well’ if that makes sense, I have other issues after having my second baby. You are young to to be diagnosed with monoclonal gammopathy of unknown significance (MGUS), probably the closest to my age that I’ve come across so far! So you would have been 38 when you were diagnosed? How often do you have your bloods done if you don’t mind me asking. That’s funny that you should say that, my granny is 81 & is in amazing health considering her age & absolutely has a better immune system than me! I don’t drink & have never smoked, I’m so fed up of being poorly & run down! I hope you are keeping well 
Laura x
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Hi Elizabeth. How did your 4 month check up go? Hope all went well and you now have some respite. My next lot of bloods are end of December with results on the 9th January. A scary time isn’t it? Hope all is well.
Kind regards
Annie xxx
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Oh @LauF93 you word it so well when you say ‘I suffer with my health more times than I’m ’feeling well’ if that makes sense’', it makes perfect sense and it is ‘hidden disabilities’ that others cannot see.
I get to the stage when I cannot be bothered to say how I am really feeling …again.
So I often put my default smiley face on.
I would have thought It must be difficult for you with your children and their needs.
Be very kind to yourself and look after yourself and please do keep posting
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Oh @LauF93 ,
I totally sympathise with your post. I was diagnosed with monoclonal gammopathy of unknown significance (MGUS) last year after 18 months of feeling rubbish with infection after infection, nerve pain, shaking, neurological issues etc, etc. I then developed immune responses to all medications I was given. Today I have had a review with my GP as issues still recurring and ongoing after three years. I had COVID in January 2021 and following that my health fell off a cliff, culminating in monoclonal gammopathy of unknown significance (MGUS) and needing checks every three months. My pain, infections and extreme reactions to various antibiotics are draining so I feel for you also when you say you feel poorly more than you feel well.
I also don’t drink or smoke and feel a bit cheated that I feel so unwell, especially with the monoclonal gammopathy of unknown significance (MGUS) hanging over my head. I would just like to get on with my life.
Hope you get some answers shortly.
Look after yourself.
Alex x
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Hi Annie 
Thanks for asking.
The appointment went well. Paraprotein is stable. Lambda increased, but still ratio is within range. ESR is still high, so continue to have inflammation. High PTH. Normal Vit. D.
Because the purpura is ongoing and now have ? rash, bilateral on my face, she prescribed 2 other tests for vasculitis. Her question is whether we can determine if skin issues are consequence of monoclonal gammopathy. My home doctor added to the additional blood tests as well. The blood tests on the 14th. Then I take those back in the both Hematologist and home doctors.
Weird thing, it almost feels like my muscles are rejecting being attached to the bone. Weird way to explain the feeling, but that’s the only way I can describe an all over aching feeling that the prescription ibuprofren doesn’t help. Boh… Just typing that out made me think to check beats per minute though, as the feeling is similar to when I have tachycardia.
That sums up my complaints for the whole month of December! 
It’s almost time to put up Christmas lights and enjoy the lovely colors and smells of this season.
Please keep us up on how everything is going with you as you have time!! How are you feeling?
Elizabeth
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Thank you for letting me know how things went. Sort of a mixed bag wasn’t it? So good to hear paraproteins are stable and Lambda is still within range. Your high PTH, is that higher levels of calcium in your blood? Also do they know what is causing the inflammation? I do hope they can help you further here.
Many medical people say monoclonal gammopathy of unknown significance (MGUS) is asymptomatic but many with the condition mention bone pain and you mention weird feelings in the muscles which I experience too. Also numbness is another problem. You are right, nothing seems to touch the bone pain.
I will let you know how things are with me in January and I will post on the site too as I want to see how Erica is doing, she has been such a support.
I’m not too bad at the moment, not looking forward to my cystoscopy on Tuesday. Then more bloods this month with results on 9th January. Good days and bad days eh?
Meanwhile I wish you and yours a Merry Christmas and a Happy New year. Enjoy the season. Xxx
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Hi @Annie666 and @elipt66 yes, @elipt66 a mixed bag but you have had a great response from @Annie666.
Yep. good and bad days sums most of us up.
Still having lots of tests here as problems with lungs and heart. Breathing improved now reverted again to having problems. I am now on antibiotics so we await.
Look after yourselves and I await updates as and when.
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Hi Erica. Sounds like you are having a wee blip. I do hope they can sort things out for you and make you feel better. If we know we have some condition, our mind can work overtime overthinking, mine does it so well.
I have washed and ironed my big girl pants ready for Tuesday’s cystoscopy then I have to get them ready again to give bloods to see how the monoclonal gammopathy of unknown significance (MGUS) is doing. It is a scary time for any of us going through tests or not feeling too good.
I hope the antibiotics do their job and the tests go well, seems like you are being well monitored.
You look after yourself too. Will post again soon to see how things are. Xx
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Oh @Annie666 I frequently need to wear my big girls pants, although I have to admit that they do not get ironed after I wash them!!!
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Bless you Alex,
18 months is such a long time to be feeling so poorly & fighting infection after infection. I am like you in the sense of antibiotics not working and/or having reactions to certain medicines so I totally sympathise with you😢 it’s exhausting. So many times I have gone to the doctor with an infection, got an antibiotic, started the course & had a reaction & then have had to go through the whole process of contacting the doctor (again) waiting for another appointment then having to start another new course, it’s tiring. I really do sympathise with you. Do you see the same haematologist every time? I hope you’re keeping better.
Laura xx
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Bless you Erica,
You are such a lovely person & I can see how much time you take to respond to everyone & make them feel welcome. That’s exactly how I feel, I often feel embarrassed when someone asks me how I am, as I sound like a broken record saying how unwell I am (again)
but it’s true. I always feel like people must think I’m dramatic. When you have children you just have to get on with it, I’m lucky to have a good few family members & friends that I can rely on when I’m really unwell & can’t get out of bed. I hope your keeping well
Laura xx
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Hi @LauF93
Thanks for your good wishes…yes it’s all so tiring isn’t it. I dont really see a haemotologist as the system at our hospital is mostly remote whilst on watch and wait. I have my bloods taken at GP surgery an then I get a letter after they have been reviewed with date for next bloods. I only saw haemotologist once. After my review with GP last week I’m now being referred to immunology to look at why I am reacting to all meds. I generally have one that I used to be ok with but now, every time I have it the skin on my right hand swells and blisters and is so painful I can’t use it. 
I had a cyst removed over my coccyx last year and have just had familiar pain and swelling in the area and feeling really low if I’m honest as I can’t do anything. I spend most of my time standing or lying on my side. GP isn’t sure if all things are connected or separate issues and whether the monoclonal gammopathy of unknown significance (MGUS) plays a part. I have found nobody seems to know much about it and it’s impact on us. Like you say, I also feel like a broken record and try to carry on but I’m finding it hard at the moment. I’m always thankful for this forum to have a moan every now and then with people who understand.
Look after yourself Laura,
Hugs Alex x
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Oh @AllyBally it sounds so tough for you and yes, we are always here for you.
I don’t know why but it really helps me just to type how I am and how I am feeling on here.
I also do not want to ‘moan’ about my health issues to family and friends every time we are in contact.
However our friends on here understand, they do not have to fix us, just be here.
Look after yourself and please do keep posting xx
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Oh @Erica ,
Thankyou so so much, you are always there with support and I really need it today. Having a real ‘dark thoughts’ day today.
Hugs xxxx
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@AllyBally you are allowed a dark thoughts day.
I find just sharing that on here helps me.
I find this time of year brings up such a mixture of thoughts and emotions for me.
We are here if you need us.
So is the Blood Cancer UK support line on 0808 2080 888
Hugs xx
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Thank you for making us feel its ok to moan on this forum. I dont want to talk about my ilness all the time with family and friends sometimes it’s nice just to talk about fun things. This forum provides that outlet for us all. Norma
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