Hi @Kevin1,How was the MRI scan?I hope it wasn’t t too invasevily like a roads works drill going off in your head ewww and that you were able to think of something nice.I guess its a question of how long to wait for the results now plus your chest xrays . In the meantime also that youre getting along ok.
Bannanacake
2 Likes
Afternoon, still waiting for MRI results,will be 2 weeks Thursday!,regarding xrays that was ok,chest xrays ok.
But still mgus clouds looms overhead every day.
Do you mention to the kids friends?
Or that will worry them then ,because actually not a lot i can control regarding mgus.
Thankyou
4 Likes
Hi@Kevin1,I am sure it does loom every day,I find that esp as I am coming up to blood tests but then I tell myself to put it in perspective,my levels aren’t worryingly high yet I’m monitored every 12 weeks and as you say there is nothing you can do about it .Re your question about telling family friends.I have told my Daughters and Brother, given all the info from Myeloma UK and BCUK on MGUS for them to read and left it with them ,all I get is ,well its not anything yet and I guess thats the bottom line, thats why this forum is good for understanding what you are going through.My family know I am on watch and wait so unless there is a rapid change I’ll keep quiet or unless they ask.I think it would be useful to share the info then you are not carrying it alone and just say what it is and what investigations you’re having.Great news that your chest X ray was ok ,that is reassuring ,not long for MRI result.
Hope that helps,and others may give their thought too. 
3 Likes
Agree that sounds like a sensible outlook, my children are grown up so will point them towards mgus mm literature etc.
Kev
4 Likes
Hi @Kevin1 I am not surprised that you are awaiting your MRI scan results, waiting seems to be forever, doesn’t it.
Great news that your chest xrays are OK.
Yes, I think we all find the clouds loom overhead so much, that is a good way to describe it.
I can feel my blood tests approaching next week now.
It is a very difficult question about telling kids, family and friends.
You will get a lot of different experiences and thoughts on our forum.
Personally I think it is on a need to know basis with family and friends, but I told people in Christmas cards as that was when I was diagnosed.
Kids are part of our family units and whatever their age they very quickly sense that something is amis and often put 2+2 together and make 5. I also think that it should be in an age appropriate way, reassure them and let them know you are there if they have any questions etc
Please let us know how you are doing and look after yourself
3 Likes
Hi many thanks for reply, yes I will broach the mgus diagnosis to children.
I understand that its a very small % that go onto Smouldering then MM .
But when I was diagnosed with GBS those odds are 0.6 in 100,000,
Definitely be in touch soon .
Thanks again kev
3 Likes
Hi @Kevin1 I have been thinking about you, how are things going?
Look after yourself
2 Likes
Hi@Kaycie,just wondering how are you doing and have you been given an appointment yet ?
2 Likes
Good morning @Bannanacake. Thank you for your concern, its very kind of you. I’m still waiting for my Haematology appointment to come through. I was going the chase the GP today. I have had second lot of bloods done but again I cannot interpret them as there is no reference to IgG Kappa or IgG Lambda. In the meantime I’ve had Nerve Conduction Studies (awaiting results), physio & podiatry appointments. I’m not sure any of these appointments have a purpose but I’m attending them in hope anyway. I’m scheduled to go back to Neuro on 12th July but as its stands I’m still in the dark. I will update on here as soon as I have answers, who knows how long that will be. I keep telling myself that if no one is asking to see me that is a good thing but there is always that niggle at the back of my mind wondering if something is being missed. I’m trying to remain positive but its very hard. I guess everyone on here feels the same. Thank you for listening to me moan on, this forum helps a lot!
How are you?
2 Likes
Hi @Kaycie good to hear from you and that things are moving forwards albeit slowly and yes re chasing your Haematology appointment .Thats great that you have had nerve conduction tests they will give a picture of any disfunction so very useful.I had mine 2018 and they discovered I had sensory neuropathy.I think any appointments you have ,physio ,podiatrist are all useful in keeping you going.The podiatrist can also test nerve reactions in your feet.The balance Physio and Physio for arthritis exercises have really been brilliant for me.Im sorry you can’t interpret your blood results if you wanted I’m sure the BCUK helpline would help.I was just listening to Radio4 "just one thing"about how the practice of meditation helps 
yes I try and do my exercises x2 a day plus walking so I’m reassured lol I’m doing my best. Thank you for asking how I am .I had my Blood Tests 2 weeks ago and the paraprotein is still active but minimally so I can relax about that till August.I was in a bit of a state last year as it was rocketing up so I do get anxious around the time of testing and I know what you mean about something niggling away .I’m sure if there was something dynamic going on you would have heard .Mainly its a matter of keeping an eye on the levels and Haematologists arent too concered till the levels creep up .Im due an appointment with my Neurologist ,on the priority list but it will be months so im just not worrying myself about it now and enjoying getting out again post covid,I go to the hydro pool every week and its so lovely to be in the water.Im glad to hear you are keeping positive, @Kaycie Im off to do some felting which I love and I find being creative helps me .
Look after yourself and enjoy the sun 
its helps
Bannanacake
2 Likes
Hi @Bannanacake, thanks for your your reply. You sound so positive, its given me a boost to try & relax a bit more about the whole situation. I’ve just called haematology for an update and they’ve said my case is with a consultant for review at the moment which, just knowing someone is doing something, has made me feel much more reassured. As you said if they were concerned I’d be seen straight away. I do use mediation and I find that really helps, having two dogs forces me to walk with my partner everyday, albeit on crutches, so that also a good thing. I like the sound of Hydrotherapy, I will look into that. I’m pleased your paraprotein is behaving itself this time, that’s a positive, I can empathise with your anxiety though. Enjoy your felting, it sounds very therapeutic. Take care 
3 Likes
Hiya Kaycie,
My name is Michelle I was diagnosed with MGUS in 2015, only because i knew something was wrong with me other than my other problems shall we say. I have Fibromyalgia, which i still wonder is it mgus or not i also have osteoarthritis and psoriatric arthritis and my dr believes i have had reactive arthritis too, i have other things too, but i’m getting bored writing this so i can only imagine how you are feeling lol! what i’m trying to say badly is i totally am getting where you are coming from, the thing with mgus is it can have many different symptoms like i went through a period of my face feeling like it was on fire really painful and now i just run much hotter than most people and i can actually feel my temp rising it’s horrible plus i think i’m perimenopause , i have had shortness of breath too i have chronic pain since i was a child. but mine has gotten worse since 2009 skin irritation to neuropathy and balance and vertigo issues, i think a lot of my issues come from mgus. I think that the immune system thing the risk is so minimal it’s like being a normal healthy person, but yes get all your injections and wear masks i no people are getting lax with it but i still do every time i go outside as I’m a diabetic and i really don’t want it or a even the simple flu no thanks. Anyways i think it’s good to know as much as you can about mgus i find the more you know and understand the less there is to be scared of. My Dr tried to do a similar thing by not telling me exactly what i had avoiding certain questions, i let him get away with it for months ,but before my following app i went into research mode and i diagnosed my self with Kappa IGA light chain mgus and i sat in his office tried asking him what i had, to give him one last chance, but he did the usual avoiding and i came out with it and he looked Gobsmacked. And i was right! Maybe you need to take “THE BULL BY THE HORNS” get some real answers i think some dr’s like to keep info from patients it’s like all those big words they use it’s a language they speak and we don’t it makes them feel important in charge etc, okay i’m gonna stop taking this is turning into a rant apologies, sometimes i get carried way with myself nice too chat hope i helped even just a little bit Bye.
3 Likes
Hi @chelle151, Sorry to hear that you’re having to cope with so much but it sounds positive that you were able to finally get a diagnosis even if it was only through your own research. I have decided there is no point in me discussing anything with my GP until I’ve been to haematology now. To be honest they can’t even get the full MGUS name typed correctly on my notes so I think that says it all really. On the plus side they aren’t rushing to see me at haematology so I’m taking that as positive for now. I hope you at least get to enjoy some of this beautiful weather we have right now. I find getting out in the fresh air makes a huge difference to my well being. Have a good weekend, take care.
3 Likes
Hi Kaycie,
your prob right about not too much to worry about, and i must admit i’m not good in hot weather so i’m sat in front of my huge FAN! So i’m cool, stay safe, stay well!
3 Likes
Oh @Kaycie I really agree with you about getting out in the fresh air. It makes a huge difference to my emotional and physical wellbeing and a great way to sort things out in my mind and set me up for the day.
have a good weekend xx
2 Likes
Hi. Everyone!
I have just had a blood results back, well at least some of them my CBC are all normal but my kappa free light chains have shot up from 37.2 to 66 they are getting a little worried and they will be checking bloods again in 6 weeks time, It’s weird i feel okay apart from my usual issues, so i’m gonna stay positive! I worry bout it if i have too. thanks guys x
2 Likes
Hi@chelle151,thanks for posting and its good that you are having your light chains checked in another 6 weeks and that you are being monitored as you say with all your other stuff going on. .How is your cat by the way?I had a chuckle when I read in a recent post that you had taken her on the wrong day,I remember the tussles we used to have with ours ,soon as the box came into sight! Im glad you are staying positive ,will you be trying new recipes again ?Im knitting lol.
Look after yourself
Bannanacake
1 Like
Hi, My cats good, her app is next week, she’s an old girl but she’s a fighter like her Mommy, yes a new beef stew recipe and meat loaf i will be trying asap, had a really bad belly past week not up to cooking esp in this heat too, i have started going swimming twice a week i love it, i no it doesn’t sound like much but for someone who never leaves the house it’s not bad. What are you knitting? It can’t be a scarf or jumper LOL! Take care of yourself x
2 Likes
Hi@chelle151,the swimming is just the thing 
I go to hydro pool for exercise and have a swim ,love it ,like you I enjoy it so much and I like the coffee after just as much !Im knitting a blanket to use up my stash ,i can just mindfully /mindlessley knit without following a pattern and i love putting the colours together. No not a scarf or jumper lol ,they’re all away for now. Hope your having a better week and your cat sounds a sweetie. Happy cooking and take care too
1 Like
Hi @Bannanacake and @chelle151 I remember crocheting my ex hubby a tie when were first married and when they were all the craze (well, honestly they were many moons ago) and it started off well and then veered off at an an angle nearer the bottom a bit like a hockey stick, his reaction shows why he is an ex !!
A new beef stew recipe and a meat loaf sound good to me. My beef stews are always different as I shove anything that needs using up in them.
I am noticing quite a few people on here extoling the virtues of swimming and coffee afterwards, sounds appealing in the hot weather we have here.
I hope your cat gets on OK at her appointment next week @chelle151 and we haven’t let the cat out of the bag if your cat reads this.
Look after yourselves
1 Like