Good morning @Annw and welcome to the forum ,its great that we can all share our experiences and feelings to support each other. @AllyBally its good to know how you are and I read that you have read my posts,that is encouraging for me to know you and others benefit,plus myself for getting it out there.
I think with Christmas etc ive got behind with myself plus ive had a few setbacks (dental😔)and of course im putting it all down to MGUS which is probably not the case but its what happens now for me.
I had a really bad flare up of arthritis before Christmas went to A and E .
When I saw my GP I tried to get her to inform the Haematologist ,with the added support of www.myeloma.org.uk Myeloma and MGUS A Guide for GPs.
So I am happy to say quoting from the advice an e mail waa sent ,waiting for a reply.I read that @2DB has already given the MGUS link.
I would encourage you @Annw and @AllyBally to have a look at the website see what you think.
On your levels rising @Annw have you been reffered to Haematology or could you ask the Nurses on the BCUK website or Myeloma support line ?I have found both very helpful.
I totally get how knowing about MGUS has affected you @AllyBally and that your family dont get your anxiety about this.
It is such an unpredictable thing and Watch and Wait is very difficult.I listen to the meditations on BCUK and plan things to look forward to in the meantime,plus hobbies and walking.
Ive replied to you both just now ,hope that is Ok .
Hope the sun is shinning on you today.
Bannanacake
Hi@KevinI great ro read your post and you are hanging on in there ,I have been wondering how you are as my tests are January too,so good luck and lovely that your Grandaughter helped you with the "tech "stuff.Unfortunately my Grandaughters live a distsnce away
So precious moments for you.
Keep posting
Hi @Bannanacake,
Yes I often read your posts and thankyou for responding. Sorry to hear you had a rough patch recently. Interesting you say you feel things are related to your MGUS. I have had nearly two years now of a whole raft of strange things and responses to medications. I won’t bore you with all the ins and outs but I began to feel like a medical conundrum after being healthy all my life Things were brought up as possibilities ranging from migraines, slipped disc, rheumatoid arthritis and even MND at one point! Phew, glad I dodged that one! The other thing was long COVID and although I didn’t fit the pattern I do strongly feel that having COVID in January 2021 was the beginning of all of this.
Thankyou for the suggestion about myeloma uk. My specialist nurse also pointed me there. I have also been ‘gently assertive’ as lovely @Erica suggests and asked for a face to face appointment next time to ask all my questions. I have also signed up to the OxPLoreD research and just have to get agreement from my haemotologist. Feel I need to do something positive with this rather than just waiting around.
Your suggestion regarding hobbies etc is welcome and I have been doing some Qigong every day which is great for stretching and breathing. It’s amazing what you can learn on YouTube
Thinking of you @Bannanacake and @Kevin1 as your next appointments must be soon? Let us know how they go. We’re with you.
Sending positive wishes and hugs
Hi @Annw a great big welcome to our forum.
I think your anxiety is really normal and probably heightened when you cannot find out much about your condition.
What I have realised on here is that many of us share the same thoughts, feelings and practicalities no matter which blood cancer we have.
If you would like to talk to someone the Blood Cancer UK support line is there for you and a lot of the information and leaflets are useful across all blood cancers to.
I look forward to hearing more about you and really look after and be kind to yourself
Good afternoon,hopefully all above can see my post’s plus all at Blood Cancer Forum.
Too start with this latest post (moan) might come across as Medical Professionals bashing,but this was my experience 7yrs ago and occasionally rear’s it’s head again.
Back tracking illnesses and still GBS and with this 2022 diagnosis off MMNCB these go hand in hand . LBBB heart condition unfortunately awaits Pacemaker ( found out with random symptoms and ECG).
Been carrying a Lipoma since was Teenager ,last two years got bigger and painful. Scans and appointments now seen last week plastic surgeon,so awaiting Excision then biopsy,they saying benign so fingers crossed.
Now March 2022 bloods taken due too months and still lower back pain,hips,left side ,feeling it deep in bone (no DR not muscle) .
Day’s later Haemo called Got MGUS wotch wait….bye! Tears Panic Anxiety Goggle and Repeat!
IGG lambda Red blood cells low ( but last 4 blood tests always abnormal) kappa light chain abnormal.
September above abnormal! So awaiting next blood tests.
Please Please Drs Neurologist’s Physios etc don’t just read my Health History,saying you anxious you low mood you depressed it’s a cop out.
We all know our bodies,pain,pain is bone pain last 12mnths ,not in my head.
Awaiting MRI again.
Hopefully not bored you all
Regards Kev.
Stay well people
@Kevin1 Since last 8 months its almost similar story with me.
I have seen 6 specialist, 15+ Gp requests, 17 sessions of physio… and nothing helping.
I have been recently diagnosed with monoclonal gammopathy of unknown significance (MGUS).
I have been exactly told similar things multiple times that its in my head. I am just 39 i was a runner & climbed 3 peaks of UK and doctors say the pain is in my head… I would say just like you said, I know myself, its totally different ache & pains since 8 months.
Now because there is no treatment for monoclonal gammopathy of unknown significance (MGUS) I am just tolerating the pain daily & struggling a
Good afternoon all, Apologies in advance for zero posts on health issues.
This will be Contradictory but I been busy .
Perhaps busy with Anxiety and appointments cancellations.
Right dont fall asleep! Lipoma op cancelled 4 times.
On hold ,because of other issues perhaps taking the lead.
monoclonal gammopathy of unknown significance (MGUS): April bloods IGG lambda obviously still
Paraprotein from 5 to 6 lower end I know
Igm below reference limit ?
Why did I have to know about (WOTCH AND ANXIETY WAIT )
This with me from when wake up till bedtime and on continuous play
Obviously this individual,others can just push on .
MY 2-5 years of horrendous lower back pain ,hips,neck .
A outcome,sorry to say Dr + Neurologist it wasn’t my Depression/Anxiety (am not aiming digs )
C5/C6 nerve impingement plus degenerative issues
L4/L5 collapsed discs
L5/S1 Effect nerve damage
MRI picked up .
Waiting on treatment if any .
For my GBS/MMN
To try again with IVIG INFUSION
But different brand of ivig and over longer period
So September 3 days and infusion lasting 5/6 hours
Wait 5 weeks the same again,over six months
In between have evaluations for any nerve muscle improvements.
If so then IVIG For life ,as I know it’s not a possible cure but hopefully get some good quality of positivity life ,perhaps ditch Crutches,or not tripping,actually balance issuers better .
Motor symptoms get stronger.
Regards Kevin
All the best to all whatever you are experiencing.
Gosh @Kevin1 I just do not know to say.
‘Watch and wait’ or ‘watch and worry’, that is why I prefer the term ‘active monitoring’ although it often certainly might not feel like it
Those waiting for tests, results and appointments are certainly always anxiety making for me.
Please keep us posted @Kevin1 and look after yourself
Hi is this forum still being used? I was wondering if someone can help me. I don’t know what “immune paresis is present” means, in my last blood test it was picked up as something to be noted but as I’m under the care of my GP rather than haematology noone can tell me what this means. Also, I won’t be under the care of haematology until my paraprotein level raises to 15% but I’m currently at 9%, this has risen 3% over the past 5 years. If I’m going at a rate of 3% over 5 years does that mean I’ll have to start worrying in 10 years time? I’m almost 45 at present.
Any help or advice or even someone to answer the random questions that pop into my mind would help.
Oh @Chantelle3 we sure are still here and we have more people joining, reading the posts and posting.
I am not able to answer your question, personally I would ask your GP to find out the answer to the question and any other questions you might have and get back to you or refer you to someone who can answer your questions.
Take lots of care
Hi @Chantelle3
I’m presuming you have monoclonal gammopathy of unknown significance (MGUS)?
Simple put as my understanding )I’m not a medical professional I live with myeloma)
Immune is your immune system
Paresis means mild or moderate changes
What that is referring to I don’t know from your post.
As for paraprotein levels rising there are lots of factors to this and that’s why your bloods will be monitored
I will link you the GP guide from myeloma UK
This may help you form questions for your GP and if they don’t know perhaps you could ask them to find out.
