Hi all,
I was diagnosed with monoclonal gammopathy of unknown significance (MGUS) last year and on watch and wait. I’ve had a couple of episodes of extreme fatigue, one in March and another over the last week. For a couple of days I’m wiped out, drowsy and a little nauseous, slightly shaky and no energy for anything, then over the next few days I slowly feel better. It’s a bit like recovering from flu, that’s the only way I can describe it.
The last time I had it in March, heamotology suggested I get my b12 checked with GP, who thought I may have been fighting something off. B12 levels ok and heamotology and GP didn’t seem too bothered.
Just wondering if others have felt this way. I just can’t face going through the process of docs appointment at the moment as I have been so many times over the last 12 months. Thought I would ask here to see if it’s just part of monoclonal gammopathy of unknown significance (MGUS)??
Thankyou in advance.
Hi @AllyBally fatigue really is debilitating, isn’t it, and not just confined to monoclonal gammopathy of unknown significance (MGUS) patients.
I attach a link to the Blood Cancer UK website on Fatigue.
Blood cancer and fatigue | Blood Cancer UK
I could write a book on it, I have Chronic lymphocytic leukaemia (CLL).
I had a ‘bug’ at Christmas and I just could not shake it off, it took months and my fatigue felt never ending, so perhaps that is why your haematology asked you to get your B12 checked.
I can understand you not wanting to go through any more appointments, that is fatigue isn’t it.
I find all tests, results and appointments stressful and also wear me out emotionally, physically and practically.
I hope others with monoclonal gammopathy of unknown significance (MGUS) can share their experiences.
Be very kind to yourself
Hi Ally, I was diagnosed with monoclonal gammopathy of unknown significance (MGUS) and you will have flare ups with feeling of extreme fatigue. I most certainly have. Every 3 months at my phone appt with the consultant I would tell him about it but he would always dismiss it. Then one day he said to me (bear in mind he’s the haematologist) I am probably deficient in vit B12, so I must make an appt to see my GP who can arrange for a blood test to be done! I felt very embarrassed asking for the blood test at the Drs surgery however due to a backlog I was going to have to wait 3weeks!
I was then told to ring daily for a possible cancellation. This I did and no appointment. I was told then to contact phlebotomy at the hospital and had an appt in the hospital the same day! Just why didn’t the haematologist just refer me for a blood test? It’s a shameful abuse of the health service! The answer came back to him eventually which was negativel! He’s just a waste of space! 
Hi @Trish and @Erica for your replies and your info. I keep reading that monoclonal gammopathy of unknown significance (MGUS) doesn’t usually have symptoms but the more I read on this forum it seems that many people have various unexplained symptoms. I have had so many seemingly unrelated symptoms and I’m sure my GP thinks I’m a hypochondriac 
. I’m someone who likes to understand reasons why I feel the way I do.
Trish, sorry to hear you have had a hard time of it too, it’s hard work getting someone to listen sometimes isn’t it? I’m so glad I have this place to talk things through.
Thankyou for taking the time to respond @Trish. Were you told that fatigue flare ups are part of monoclonal gammopathy of unknown significance (MGUS)? Interested in what consultants have told you about fatigue.
Xxx
Hi Ally it’s a difficult one as I have 2 conditions running alongside one another that both mimic the same symptoms. Sarcoidosis does have extreme flare ups involving fatigue and with monoclonal gammopathy of unknown significance (MGUS) I have had infections that are way out from the norm nearly rendering me in hospital 6 months ago! The infections leave you exhausted and you really cannot fight it and have to rest. Who know with this condition what the future will bring. I am 60 and my haematologist told me I am very young to have this but they will throw every treatment that is available at me which I suppose is some comfort. Now the waiting game for the CT but he said it would definitely be within 2 weeks, then of course there’s the results! Praying it won’t be long as things have pretty much accelerated during the last couple of weeks. Thank goodness for all these wonderful people on here too 
x
Hi @Trish ,
So sorry to hear you have sarcoidosis as well. You really are going through it at the moment. I am also almost 60 and I have just decided to take early retirement because as you say, the future is uncertain.
Please do let us know how you go with your CT scan. I’ll be thinking of you.
Sending Hugs
Alex
Thank you Ally I retired from the police 6 years ago with so much to look forward to. I am having a very down day today as it’s only been the day before yesterday I was dealt that news! I think reality of the situation has kicked in today and I feel exhausted. The pins and needles and cramps in my legs and feet and are now in my hands and arm too and are at another level this morning which is horrendous I have to say. However I am trying to stay positive, we have to lovely don’t we? You take care too x
Oh Trish @Trish ,
I hadn’t realised it was a recent diagnosis. The ‘down days’ are the worst. I can imagine where your thoughts are going and I think it can be a really lonely place to be. I have a wonderful husband (also a retired police officer) but his eternal optimism isn’t sometimes what I need. Sometimes you need someone to say how it really is. I have lots of expletives I use on my down days, (which I can’t write here as I will get banned!) 
…but happy to send some virtually to add to your collection!
Please be kind to yourself on these days and know you are not alone.
Sending more hugs and some really strong expletives!
Xx
Hi @Trish sorry to hear that you are having a very down day today.
Someone once said to me that we have to have down days to appreciate when you are having a better day.
Don’t forget how recently you were diagnosed and the natural shock of that and that as I so often say takes a very long time to subside.
I also think that it was a time I also looked at the losses I suddenly thought I had. The loss of seeing my son get married and have children, well I am still waiting 19 yrs later.
The loss of the future I had mapped out for myself etc. etc.
It is natural to have a down, perhaps an introvertive reflective day.
@AllyBally you made me laugh, yes, life does not seem fair sometimes and I have a bag of expletives too if you would like them.
The main thing is that you really look after yourself and you can be really honest on here and that is what we are here for.
You can also talk to the Blood Cancer UK support line on 0808 2080 888
I am sending you a great big bag of hugs xx
Aaah @Erica ,
Wise and kind words as usual. Bag of hugs received, thankyou. Maybe we could set up a library of extreme expletives that all could use on ‘down days’.
Feels like Trish @Trish could use a good few today.
Hugs to you both
Xx
Thank you both Ali and Erica it does mean a lot. I’m ok now I’ve had a loud word with myself and have cleaned my house, again! It takes the focus off what’s going on in my head. I’m not a patient person and it’s driving me mad having to wait for the CT. We asked about going private but the consultant said it wouldn’t make any difference because cancer patients get priority anyway so at the most it’s a 2 week wait. 2 weeks is a long time to me lol and anyone else waiting for answers. To be fair I haven’t had to wait long for the initial results from the biopsy which was horrendous I may add! I wasn’t expecting that either! I thought I was just speaking to the consultant face to face as for the last 3 years it’s been telephone calls only. Then he throws in that he’s going to do the bone marrow biopsy ‘NOW!’ That’s when the F word came out of my mouth!! 
no time to take it all in either!! X
Oh Trish @Trish, that’s quite a rollercoaster and it sounds like you just need to know? It sounds like it’s the ’ not having any control’ that you’re struggling with, and I get that. I hope you have some support at home?
Please come back at tell us how you go on.
Look after yourself.
Xx
Oh, @Trish and @AllyBally Oh, yes, I know the cleaning of our flat from top to toe and I do not think any of us are patient patients, although frequently we have to be.
Yes, those 4 letter words just slip out of our delicate mouths sometimes. xx
Hi Erica, thank you for your kind and supportive advice. Yes I did use the f word to the nurse and apologised immediately. She laughed and said she had heard a lot worse! It was a shock! Xxx
Hi @Trish ,
Just thinking of you and wondering how you are doing?
Xx
Hi everyone!
I have monoclonal gammopathy of unknown significance (MGUS), also frequent infections, sometimes low grade fevers that last weeks, and fatigue can be debilitating. You aren’t alone. 
I’ve been referred from dermatologist to review autoimmune system impacting the skin. What I thought were shingles recurring even after vaccination are not shingles. Also the purpura patches on forearms, especially right. Those seem to come out of nowhere. The Dermatologist asked me to take all of my hematologist visit reports as well as blood results. She believes everything is affecting the other.
So whether the IgG lambda has contributed is an interesting question. I read recently about the monoclonal gammopathy of unknown significance (MGUS) as well as the MGCS, monoclonal gammopathy of clinical significance.
After my appointments and blood tests, (October/November) I can let if they discover something that may be interesting for you as well.
Meantime, take the best of care. Swear like a sailor as needed! 
. And dig, sometimes deeply, for a sense of humor.
Elizabeth 
Hi Elizabeth @elipt66 ,
Interesting…I was having skin issues before I was diagnosed with monoclonal gammopathy of unknown significance (MGUS) and ended up having surgery for a cyst over my tailbone last August…a literal pain in the *** (another word to add to our swearing library!)
I also have nerve pain in areas of skin and other lumps and bumps like hives that pop up on my face??
After having COVID everything seemed to be out of kilter and I remember saying to my GP at various appointments, ‘i feel like my immune system has gone into overdrive’.
Interested if you find out any more at your next appt. Hope everything goes well and you get some answers.
You did make me smile…you take care too.
Hugs
Alex
Hi @elipt66 thanks so much for your post, very interesting, yes, please do report back whether it appears interesting or not.
We are very complex beings.
Look after yourself
Hi Ally thank you so much for checking up on me I really do appreciate it. I was doing ok thanks and even bought my mother of the bride dress yesterday and felt on cloud 9.
Then I came home from work today at 4.30pm to a phone call from my consultants secretary saying he wants to see me on Tuesday at 11am. I asked why and she wouldn’t tell me. Now I am worried sick because the last thing I heard from him last week was I needed a CT scan within 2 weeks to confirm if the cancer had spread to my bones, which I still haven’t had. What am I supposed to think now? How cruel to do this to anyone.
Oh Trish @Trish ,
I can only imagine how stressed you are, and understandably so. A cruel bump back to earth from wedding outfit cloud nine! I’m hoping you have someone you can do something nice with this weekend, to try and take your mind off things a little.
I’m passing on Erica’s big bag of hugs, as I think you need them more than I do today.
Look after yourself, and we’ll all be thinking of you on Tuesday.
Xxx