I’ve recently been diagnosed with Mgus…in May. I originally went to Docs with back pain, burning pain in hips and tightly hands & feet. But the tests showed lambda Paraprotein and was diagnosed with Mgus. I have got my next blood tests etc next Tuesday.
Last week I started feeling very dizzy and fell over in Lidl, followed up with banging headache and nauseous.
I went to the doctor and she said I had Labyrinthitis which is an inner ear infection affecting your balance. I’ve been prescribed anti sickness/dizziness tablets. She reckoned it was brought on by stress. Been singed off work for 2 weeks and feeling really tired all the time.
Ive since found out that balance can be related to Mgus.
Have any of you suffered with this type of thing….?
Would you say it is all part of this diagnosis?
I’m so confused as my doctor says it isn’t but I’m not so sure?
Thankyou in advance
Hi@Beki, I hope that you are feeling better,I was wondering how you were getting on .Sorry to hear about the labyrinthitus its a horrible experience for you.I have had issues over the years with my ears causing balance /sickness problems,was diagnosed BPPV a,begnin condition but very disruptive. I agree with your Dr its not related to MGUS.Its likely that your MGUS diagnosis and all your family illnesses has caused you to be more stressed and thats not surprising. Ive had a lot of support from the Menieres Society UK they help and advise on all sorts of vestibular problems .Its useful to do exercises to help recover your balance and re train your brain once you are over the dizziness.
Thats good that you are having a blood test on Tuesday I think you said it was 1gl?that is very low but its a start to keep testing to see how it progresses.The Haematologist wasnt concerened about my result at first .2.80 gl but mine is IGg Kappa ,no light chain. I t was checked a year later and rising so now I am on 12 week tests.Watch and Wait
There is good advice on BCUK on looking after yourself and being kind to yourself so please do take it easy and keep posting.
Thankyou for thinking of me @Bannanacake
It’s good to be able to come here and share my concerns, and lovely of you to reply
I have spoken to my sister & 2 brothers now about Mgus…the doctor wanted to know all the details about my older brother with his leukaemia & Non Hodgkin lymphoma.
I only broke the news to them last week, and getting moral support from them all.
I’ve decided not to tell my Dad or children until after I get the next results, just so I can know more details.
Sorry to hear about your diagnosis BBPV
(off to Google this now😏) x
Thank you for sharing this. I’m sorry to hear about both your diagnosis of MGUS and also the complication of Labyrinthitis. I understand that can be an awful feeling and hopefully the new medication you have been prescribed is somewhat helping with the symptoms?
May i ask have you been referred to a haematologist at all for your MGUS? This may be something that your GP will consider if they feel it is needed following on from your next test results etc. However often many MGUS patients are kept under care of their GP.
In terms of your current symptoms of labyrinthitis, this is something we would anticipate the GP to keep monitoring and hope it is something that can be well managed or indeed a one off. However it may be helpful in your feedback to the GP to keep a diary of associated symptoms in case there becomes a pattern or trend to this and you can again raise this at later appointments.
In case it is helpful, Myeloma UK have this really great diary where you can note down any new symptoms, questions to raise and indeed worries or concerns as they arise- Your Patient Diary: For patients with Monoclonal Gammopathy of Undertermined Significance (MGUS) - Myeloma UK
Also if you would ever like to talk anything through about your new diagnosis please don’t hesitate to contact our support line at any time. We are only ever a phone call or e-mail away- Blood cancer information and support by phone and email | Blood Cancer UK
Best Wishes, Lauran
Hi @Beki I have Chronic lymphocytic leukaemia (CLL) and I have had it 3-4 times over the last 25 Yrs, I was diagnosed with Chronic lymphocytic leukaemia (CLL) 18 yrs ago.
However during lockdown I had it 4 times, the GP gave me pills and it went away.
I really feel for you and @Bannanacake as it is the most horrible, scary, out of control, sick feeling that I think I can now predict it as I feel it starts in my sleep and as I am doing Pilates.
Luckily I have always been at home when I have had it and how embarrassing and extra scary to have it in Lidl’s.
Be kind to yourselves both of you.
Thankyou for your reply…
I have saved the diary link to my notes and will print it out, Thankyou so much
I am still under my GP at the moment, and although she really is the most lovely person, and really looked after me while my Mum was poorly and has even rang me since she passed away to see how I’ve been getting on. She was also my Mums GP…However I would really like to see a haematologist because I feel a little lost with all this at the mo…perhaps she will refer me after these next results
I will keep you informed
When my MGUS was discovered in 2014 via blood tests done by GP which came back abnormal with paraproteins of 11 my GP immediately did an urgent referral to Haematologist for further tests. I have been under their care ever since then on “watch & wait”. My MGUS has progressed in 2017 to Smouldering Myeloma and my Paraproteins are currently at 22. I am still on watch & wait with bloods checked every 3 months. MGUS does not always progress but you should still be monitored regularly with blood tests. I know how scary it can be but hopefully you will get answers from a Haematologist.
I have been referred to a Haematologist now, and have an appt to see them 18th July. I will keep you informed.
Thankyou for all your replies. Having you lovely people to tell my concerns to and hear from you, is just lovely x
Hi @Beki I have been thinking of you.
How did you get on at the Haematologist on July 18th?
Look after yourself
Hi @Yvonne,how are you?I have been reading your posts as I am interested in anything “MGUS” although I am sorry to read that you have progressed to Smouldering Myeloma and I hope that you are doing Okay.My GP wrote to the Haematologist when my paraprotein rose to 8.70 IgG Kappa,and she sent pages of guidelines so I am now on Watch and Wait every 12 weeks.
Last test it was 11.30 in 8 months so I think its going slowly although as you say not all MGUS progresses my light chain was normal which she said was "reassuring"but im going to ask to have it checked next time its confusing as to whether it will appear if it wasnt there in the first place ,who knows.We are planning a visit to our Grandchildren in England before next lot in August so that will take my mind off it,(although both recovering from Covid after being super careful since 2020,)least hopefully ive built up a resistance.
I hope this finds you well
Oh @Bannanacake a trip to England to see your grandchildren sounds ‘just what the doctor ordered’ and such a wonderful distraction, enjoy, you deserve the visit.
Look after yourselves and let us know how you get on in August, please.
Hi Bannanacake…I too am just recovering from COVID after catching it a couple of weeks ago . My hubby has also had it. It made us quite poorly and we are still very tired, struggling with appetite and just generally weary. From a Myeloma point of view I am still stable . My Paraproteins have stayed at 22 for last couple of results but my light chains are gradually increasing. However, my kidneys are fine and I am not anaemic so that is a plus. I am due more blood tests at end August. It is a nerve wracking time I find in the week before blood tests and then awaiting results. I find I get more anxious now than I used to. I have a grandson aged 2 and we have him 1 day a week to help with childcare. He keeps us busy but like you say it is a nice distraction from worrying. Please let me know how your next bloods go.
Hi @Yvonne I am really sorry to hear that you and your hubby have had Covid and are still suffering the after effects.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 18yrs ago and I still get anxious before my blood tests, whilst awaiting the results and when I get the results, I think that it is just natural.
I bet a 2yr old grandson does keep you both on your toes, but is a very nice distraction and a very special formative time together.
However it must also wear you both out when you are struggling, tired and generally
Please let us know how your blood tests go at the end of August.
Look after yourselves and be very kind to yourselves
Thank you for your lovely message. The COVID has been horrible. Bearing in mind I have had 5 jabs I dread to think how poorly I could have been if I hadn’t been vaccinated. We are still going to be careful and wear our masks even though we are getting over it. Life is difficult enough with our illnesses isn’t it. As for my blood tests I am hoping they will be stable again but as you know it’s a bit like the sword of Damocles hanging over us.
Once again Erica thank you for your kindness
Love Yvonne xx
Thankyou for thinking of me
I apologise for not letting you know earlier…but how sweet of you to ask me.
I went to the haema/cology appointment…my m spike had slightly risen from 1 to barely 2…but she was a more concerned with my symptoms than the rise.
I keep losing balance, headaches pretty much everyday…burning hip/back pain and peripheral neuropathy. Also have tinnitus now
She is sending me for MRI scan so she can see what’s going on hopefully and perhaps then a bone marrow biopsy.
So I’m waiting for scan now…it’s a waiting game isn’t it
Anyway i hope you’re all doing ok…I will post again once I’ve had my scan.
Thankyou for your reply
You take care too
I think we can all identify with your blood test anxiety but sorry to hear that you got Covid on top. I’ve somehow managed to avoid it whilst having had the 5 jabs like yourself. Hope you are feeling better soon.
Hi @Yvonne I have been thinking about you, how are you feeling now?
Look after yourself
Many thanks for your message. I am recovering quite well from COVID thank you. The only thing that is continuing is probably the tiredness but other than that I am slowly feeling better. I have been told the fatigue can last for a while but think my energy is coming back.