A great big welcome to our forum and I am also not any good at remembering the questions I want to ask, let alone asking them, my mind goes blank immediately I walk into a medical building.
It sounds as if you have been a bit of a whirlwind of medical appointments and my head would be spinning too.
I wonder if it might help if you had someone with you at appointments.
I send you a link to a Blood Cancer UK booklet that might help you with questions.
Your blood cancer diagnosis: What happens now? | Blood Cancer UK Shop
No questions or follow up questions are silly ones, the medical profession sometimes speak a new language to me.
I am no good at thinking on my feet so anything I forget I can always ask my Occupational Health, Consultant, CNS (Clinical Nurse Specialist), or GP later.
The Blood Cancer UK support line is also there for you if you would like to talk to someone.
Be kind to yourself and give yourself time to take it all in and please let us know how you get on.
Hi thanks for the reply Erica, tbf having read through various other threads and chats, my issue seems relatively minor compared to some of the diagnoses others have had, and maybe I’m just being a bit doom and gloom but it’s just the uncertainty of having to wait on scans, then blood tests every 4 months. Certainly going forward I’ll look to take my partner with me to appointments etc
Again thanks for the reply, this seems to be a great forum/area full of information and the practical aspects of how best to go forward.
Hi @RM952 please try not to think of your issues are relatively minor.
You are certainly not being all ‘doom and gloom’ to me and I think many of us find the unknown, tests, and the never ending waiting on tests, results and appointments feels absolutely horrible.
Many of us have blood tests at certain intervals and get anxious before, during and getting the results. Blood tests do fluctuate as well sometimes. Regular blood tests are called ‘active monitoring’ or ‘watch and wait’.
I am glad that you will be taking your partner to appointments, they will probably be going through thoughts and feelings too.
Look after yourselves
Hi @RM952 ,welcome to the forum and what a lot you have going on for yourself and being so.young with your family as well.
On reading your symptoms its good you were reffered to the Neurologist.
They have wonderful ways of being able to work things out and taking bloods can help a lot,they do a "screen "as its called.
I had a blood "screen "as I was reffered to a Neurologist with neuropathy (,numbness in feet )and had the usual MRI but it just showed arthritic changes ,thankfully but its bad enough.
I do loads of exercises every day to keep the strength.
The blood screen picked up on a raised "band "which has led on to MGUS for me .
The questions to ask @RM952 are is it MGUS ?
do you have a paraprotein?
,what is the name of it?
and if you have a paraprotein
what level is it ?
and have you had a serum free light chain blood test.?
My paraprotein is IgG Kappa and I now have an abnormal free light chain .
I get tested every 3 months and as @Erica says its all a bit of a head spin so try and take it easy,the more you get to know it gets easier to understand.
Www.myeloma.org.uk have some good info on their website for MGUS.
Good luck with the scan ,if you are anxious there are some good relaxing exercises on the BCUK website,mind and emotions which help.
Its all about the breathing in and breathing out which helps to calm things down.
I hope you are having a good day ,take care
@Erica @DawnBloodCancerUK
Good afternoon,
Just wanted to update on what is going on.
So letter arrived today,got MRI scan again 4th February 
.
Today MGUS blood tests+ Bence jones urinalysis
Obviously it’s not just the wait for MRI appointment but continuing anguish off the wait.
Then blood results hanging over you.
When these are sorted hopefully clear mind ,but I seriously at peace for whatever comes next.
As I said lower back pain constantly a dull ache,ribs mostly left side,neuropathy,nausea,eating but not really bothered.
So get back to you all when I get news.
Regards Kev
Hi @RM952
I too have mgus -igM kappa-thankfully currently at a low level.
The only thing I can add to the brilliant responses by @Erica and @ Bannanacake is that you might like to get copies of you test results. Myeloma.org have downloadable MGUS diary where you can record your blood test results. I also write notes on appointment letters about what was said during an appointment and also beforehand I write down questions to ask.
Keep us posted on how you get on.
Helen
Hi @RonniePR1964 I know you were worried, how are you doing now?
Look after yourself
Hi @RM952 I just wondered how you are doing now?
Be kind to yourself
I’m doing better mentally thanks still get anxious around my tests which are due next week got to hope they haven’t increased yet again.
Oh @Annw 19 yrs down the line and I still get anxious around all my tests and medical appointments, I think it is natural.
Please do let us know how you get on.
Be kind to yourself
Hello, I am new to the forum but have been diagnosed with MGUS since 2011, the paraprotein count has been rising slowly over time, I have the tingling and numb feeling in my fingers, feet and is now affecting my legs, my balance is not good and now intermittently get swelling of my feet and legs, I wonder if this is peripheral neuropathy because of damage to the nerves because of MGUS. I have regular blood tests but have never had a health check over the years at all.
Welcome to the forum @Piphop. Sorry to hear you’re experiencing these things, it sounds uncomfortable for you. We would really encourage you to get in touch with your GP or haematologist (whoever monitors your MGUS), and let them know the symptoms you’re experiencing. They may want to run some further tests to investigate.
Anytime anyone has new symptoms or changes they should be seen. GPs can refer to a specialist for nerve conduction studies if someone has peripheral neuropathy that is debilitating.
It’s important to note that the presence or worsening of peripheral neuropathy doesn’t mean that the MGUS is progressing, but it is important you are reviewed by your GP so they can understand how best to support you in managing this.
If you’d like to talk things through with us over the phone, please don’t hesitate to give us a call on 0808 2080 888.
Hi @Piphop a great big welcome to posting on our forum.
@Alice_BloodCancerUK has said it so well.
I am a great believer of getting any new symptoms or the worsening of symptoms to my haematologist or GP.
I immediately think all symptoms are down to my blood cancer but they can also be due to so many other things.
Also my medical team need to know exactly how I am as it might been changing medications or treatments or starting treatment.
Look after yourself I had a couple of numb fingers yesterday and tried to peel sprouts, not a good idea.
I also have to be very careful when my balance is not good, it is not good in my Pilates class, I have noticed if I have a wobble then it starts off the class wobbling!!
Please do let us know how you get on and I also look forward to hearing more about you.
Hi. I was diagnosed with mgus three weeks ago. It was found during a routine blood test and was called back for further investigations which ignored due to fear. A doctor from haematology phoned and persuaded me to go for further blood tests which I did and mgus was the result. I have numbness, mainly lower limbs and pain. Fear prevents me from asking questions because I really don’t want to know. I also have bladder cancer, diagnosed five years ago and during my cystoscopy last week (camera into bladder) they have found a suspicious lesion so an operation will be forthcoming. The bladder cancer is unrelated to mgus but the mgus diagnosis on top of the bladder cancer I found fearful. I’m a bury my head in the sand type of person, no ideal and silly I know but I tend to think, if I don’t know about it then I have hope. I stumbled onto your site about a week ago and joined tonight. I don’t find this site scary because its about real people and how they are coping and how they feel so I can relate to the posts. There is no doom and gloom, just practical advice and help. I read mgus is supposed to be asymptomatic but mine isn’t and to read about others experiencing the same as myself was a comfort in a way that I’m not alone. So thank you all for posting your experiences and letting people like me read them. To date, I have another blood test in about ten weeks time. I will as usual be terrified but am now brave enough to go ahead and get it done. Taking it one step and one day at a time. Thank you all for your help.
Hi @Annie666 it really does take courage to post for the first time on our forum, thanks so much for doing so you are now part of our forum family, I hope you will feel the support.
It must have been a tremendous shock and fear for you being diagnosed with bladder cancer 5 yrs ago and in my experience getting a second diagnosis like mgus (in my case skin cancer) I found my shock and fear was compounded.
I have a husband that sticks his head in the sand and hopes things will disappear, unfortunately they don’t, I don’t think it is silly, it is just a way the body tries to protect itself.
Me and my head can be enemies because my thoughts and feelings go in all directions and not in positive ways .Personally I have found actually facing my fear, putting my big girl pants on and going to appointments means I get the facts which is better than my imaginings.
I also walk into a medical building and my mind goes blank. I have found writing a list of questions I want to ask helps.
I also have copies of a potted medical history, family history, medications, allergies etc helps me.
I really look forward to hearing more about you and how you are getting on.
Be ever so kind to yourself and you are doing brilliantly saying that you will go for your next blood test.
Hi @Annie666 I wondered if you had anyone who might go with you to some medical appointments, I found it helped me.
I find it really difficult but I have had to learn to ask for and receive help.
One step at a time works for me too, a good philosophy, so is I day at a time.
Thank you so much for your help and very kind words. Yes my hubby comes to all my appointments so I’m not alone and have support. He is finding it hard and like your hubby, he tends to bury his head in the sand, very much like myself. As I was browsing through the site, I read about your diagnosis and the other issues you have had, you have done so well, so brave. One of my big problems, is the fact I do have some medical knowledge and this is one of the factors that makes me not ask questions because I have a good idea what the answer might be although my knowledge of Mgus was limited. With my bladder cancer, even after five years since diagnosis, I still don’t ask questions but I attend all appointments and have had ten operations on my bladder so far with and eleventh coming up. I think all my bravery, what little I have, is used up on that. This recent diagnosis just floored me, coping with one thing that is quite serious then the thought that I am possibly living with another ticking timebomb.
I am lucky, I have supportive friends and family but I tend not to talk of how I’m feeling because like a lot of people, you protect them and pretend everything is ok and you’re coping well. Yes, it’s a mask a lot of us use. My hubby is happier when he can see I’m my usual self but a lot of the time, its an act. Having this site to write down the truth is a release. I’m sorry to take up so much time with my worries with so many people feeling the same. Thank you for taking the time to reply. I feel now I’m not alone.
Thanks @Annie666 Oh, I have a great big smiley mask that leaps on to my face at the least thing.
However when I have been honest with certain people about how I am feeling it has brought our relationship to a deeper level.
Although I will be honest that over the last 19 yrs I have lost some friends and gained others.
You have been through some much medically and obviously been so brave, this really must feel the final straw.
As I said I think my 2nd cancer diagnosis hit me harder than the first.
I was number with the first, it was the isolation that really hit me rather than the fear and anxiety.
Yes, being able to be really honest about how I am really feeling on here is such a relief, I am not alone or going mad, but somehow it also gives me courage as well.
My husband does do the emotional side, he is a practical person and makes a really good evening hot chocolate.
Again be ever so kind to yourself.
Thank you again for your kind reply. You hit the nail on the head when you said about the isolation. You can have friends and family supporting you but the isolation is still there because its you going through it. You have had eighteen years of on going health issues and I can’t begin to imagine how you have coped all that time, you have done so very well. I will keep popping on to the site as it really does help. I may also try, as you suggest, to be more open about how I’m feeling instead of hiding it. Thank you for your welcome advice.
Good morning Blood Cancer Team .
Quick update! Hopefully today or Friday results off neck /shoulder X ray,been super tender dull pain especially clavicle bone , all though a Locum Doctor saw me for poke prod ,five seconds look at past history.
“ well you do suffer from Anxiety Depression MH issues “ how many times I’ve heard that,and illnesses closely follow .
Also Saturday morning back to Hospital for MRI lumbar spine results,the 14 months of recurring Spine Hips Rib area pain.
April back op for Lipoma (big) then biopsy will be done 
June next Bloods.
But in between any other news will keep you posted.
Enjoy your day
Best wishes
Regards Kev