Hello everyone, hope everyone is doing well. I am 39 and a mum of 4. this June I was diagnosed with low risk mgus whilst the investigation (blood work, mri) was being done for a huge intramuscular lipoma I developed (out of no where) over the last year.
My para protein levels were 6 g/L lgG Kappa.Upon repeated bloods 5 months later( was supposed to be 6 months later but did earlier due to new symptoms) this has changed to 7 g/L.
My new symptoms are, very frequent pins and needles, numbness in all limbs although it goes away within minutes of movement. Itching all over body specially bad in the scalp. Breathlessness , fatigue, dizziness.
These results were conveyed to me by my specialist nurse. He said the haematologist will ring me later to discuss in detail.
I do have a history of cancer in my family ( grandma, second cousins, mums aunt., although I do not know the exact nature).
As you all can imagine it came as a huge shock when the diagnosis was first made. I went through all kind of emotions and still do … it becomes very depressing so I try not to think about it.
But at the same time this increase in paraprotein although very slight has increased my anxiety.
I know what the haematologist will say at the apportionment. It’s nothing, your still low risk etc etc. but my mind cannot stop wondering about how quickly or not the levels can escalate ?
Due to my age is it possible that it can escalate very quickly ?
Any insight would be greatly appreciated as whoever I try to speak about it tends to really brush it off as it’s nothing.
Hi Agnes…not an expert but some fine people on here who will help you in time.
When i first became ill and my blood was taken weekly i became really paranoid…or worried about my HB levels…if they went the wrong way even a fraction my whole mood changed.
In time you will come to realise that some times our health relative to our illness may dip…other times i feel great.
Amazing the mind though because the times infeel good are usually when my blood checks are a bit dodgy.!
The main thing now to remember is that now you will get the best help and support
All the best to you and i am sure the Forum Specialists can advise you on more practical matters like the itching etc
Hi @Agnes39 a great big welcome to our forum.
I will copy your post to the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses for you in case they can add anything.
I have another blood cancer but, as I read your post, I really remembered my similar shock, fears, thoughts, emotions and practicalities. My thoughts and emotions have been on high alert ever since and every little lump and bump that I feel and I think the worst.
I have been on watch and wait (active monitoring) for 18 yrs and my blood test results fluctuate each time. Originally, I was tested every 3 mths, but now I am on 6mthy blood tests.
I still get anxious before and during all tests and medical appointments.
I always thought I had my life mapped out, but it has really made me realise that we only have our here and now, although I can still make future plans.
I get depressed when I think about the ‘what if’s’ etc.
I would say give yourself time and be ever so kind to yourself everything you say, non-medically, seems so, so natural to me.
Please keep posting and letting us know how you are doing.
Thank you for the insight, I like your perspective. You are right, everything might not always be related.
Thank you for your kind words, yes you are right let’s just take one day at a time.
Hello@Agnes39 and welcome to the forum ,@Leefer and @Erica have given some useful insights and experiences and thats the great thing about the forum as it helps to be supported by others who understand.As you say you are 39 and young for your diagnosis of MGUS.The good thing is that you will be hearing from your Haematologist who can answer your questions.I have IgG Kappa and I am a Grandma putting me in the older category but it still comes with all the worry and emotions connected to getting a diagnosis and the unpredictability of it all.I get my bloods checked every 3 months,at my GP SURGERY on advice from The Haemmatologist as my levels are rising and so it goes on till they may become stable .Myeloma.org.uk have so much useful info on MGUS and offer great support 08009803332
As do the Nurses on the BCUK support line.I have an MGUS diary to keep my results in and I find that useful. @Agnes39 you have a lot on with your young family so please take care and look after yourself ,finding time for yourself,bit of an ask ,I know. BCUK have some useful breathing space meditations which ive found helful.Keep posting
Hi @Agnes39 I’ve got full blown Myeloma as my paraprotein levels were really high but after treatment fell really quickly and I’ve had a pretty normal life the last 3 years or so (Covid aside). My paraprotein levels are back on the rise so inevitably the full blown Myeloma will be back but I think the advice above is sound. Take things one step at a time and try not to worry too much. Also make the best of everything and live life to the full. Also probably fair to say that not everybody reacts the same with the same condition and if anything your youth is probably a plus factor. I was diagnosed at 49 and I think it’s been an advantage for me. I hope you find a path that suits you to deal with all of this though I know its not easy news to get.
I too was just diagnosed with MGUS, IGA Lambda. Protein 4/gL two weeks ago. I am 37 years old dad of two girls. I Had the bone marrow biopsy three weeks ago to confirm it which showed 5-10% estimated clonal plasma cells (might have my terminology wrong here)
I too, also told low risk for progression although haematologist hinted at some extra concern being IGA.
I find it interesting that doctors suggest that MGUS in the literature is asymptomatic. Yet here you are, along with so many others saying all these symptoms. I also have symptoms of Nureopathy in my feet (tingling feet like a simmering hot pot is best way I can describe it along with some sensation in legs)
I think the best thing is to inform yourself without overdoing it. I am going through that now but I have to stop sometimes otherwise the mind wanders.
I will keep in touch.
@Bannanacake , @Btowers , @Franko thank you so much for sharing, you will all be always in my prayers x.
Tbh I’m not worried about myself but rather about how a turn for worse will affect my kids… that’s what depresses me the most.
Also can I press for a face to face appointment with the consultant haematologist rather then a telephone call ? Or are my paraprotein levels too low to qualify for that.
Hi@Agnes39,to answer your query .In my early stages it was suggested from the Support line Nurse that if my paraprotein went over 7g/l that I should ask for a refferal ,however my GP already had reffered me to the Haematologist,who advised to continue with 4 month checks and a long list of, if this ,that, or the other to watch for .I have an annual check from my GP but if new symptoms arise I let him know.My paraprotein was discovered on a screen blood test for neuropathy.Initially it was 2.80 and I was told it was of no consequence .I asked for a repeat 12 months later and it had risen to 5.20 so kept on being checked and so on its still rising.Are you seeing your GP for blood tests ?you also need everytime to have a FBC and blood Chemistry blood test as it depends on these results as well.
As your symptoms are problematic
Is your GP aware of this?
I would let him know and ask for a refferal to the Haematologist or ask GP to do more tests for any inflammation, eg arthritis,for your other symptoms,or a refferal to a Neurologist for the puns and needles and numbness.
I dont know if that helps.
The Nurses on the BCUK support line could help you also the Myeloma support line 08009803332
Its natural for you to be worried .
7g/l is low but regular blood tests is what you need then the Drs can look for changes and you would feel more reassured.
Its a hard one as you say worried for your children,mine are all adults and its still the same .
@Agnes I hope things become more clear for you ,take care and let us know how you get
Hi@Alice ,I missed reading you already have a telephone app with the Haematologist,thats great so you can tell him /her your symptoms and go from there,hope you dont have too long to wait.Thinking of you with your family .
Hi@Agnes,sorry for the "Alice"im too ahead of myself today ,oops off to write a list and slow down
hi @Agnes39 I think most hospitals are drifting back to near normality now. Even my haematologist does face to face appointments for me now and he’s really lazy and disinterested.
I have MGUS, I’m told low risk, still under haematology and having blood tests. Reading your description of y symptoms, I realise I have the same, feels like a fizzing in my hands and legs. When asked if I get any pins & needles I said no as I wouldn’t call it that. Almost feels like it’s an effervescent. Strange that your description made sense.
Thanks guys for all the advice. I think as you have advised I’m going to call the BCUK advice nurse before my appointment so that I know what I’m talking about and don’t keep wondering about it after the appointment.
@Hussyhemlock yes your description of the sensation is very apt.
Somedays it comes on more frequently then others.
I’m so great that I stumbled across this forum. It has given me feeling of re assurance and a sense of direction whereas before I was Googling here and there like a headless chicken.lol.
Thank you guys for taking the time to reply.
Yes, i agree effervescent feeling in the feet, sometimes more prominent @ times than other times but always apparent. Wouldn’t call it pain but a strange feeling. I can not notice it if I am barefeet without socks or shoes. Shoes on make it very apparent.
I have heard of drugs like gabapentin that may help, which I will talk to my doctor about but ultimately if it is long term drug use I don’t see the point if those risks outweigh the benefits.
@hussyhemlock, what is your age? And how long ago were you diagnosed?
Hi Bryan, I was diagnosed a few months ago after having a blood test for joint pain. I’ve had the effervescent feeling for a couple of years on and off, also joint/tendon pain. I’m 62. The haematologist asked me if I had any pins & needles but I said no, forgot to mention this odd sensation. I’ve just had blood tests on a watch and wait. Next blood test just after Christmas. Liz
Hi@Btowers,yes the sensations are a strange one ,Im glad @Hussyhemlock @Agnes39 and yourself mentioned it .I dont have the sensation in my hands but defo the neuropathy in my feet .It was decided its sensory neuropathy after referral to the Neurologist and a blood screen disvovered the Paraprotein.I dont have pain or pins needles.I find the numbness when Im walking and moving around similar to yours,best without socks or shoes .The Neurologist attributed my tiredness to doing 12 maths exams in a day because the brain isnt getting the message where the feet are,fun,not ,but its just part of me now.I take poles when Im out walking (,we live in rural area ) the poles give feedback ,that helps ,but when Im in town I "navigate"myself "
Hi @Btowers @Franko @Agnes39 @Bannanacake @Hussyhemlock @Leefer I agree about the fizzy sensation + numb toes.
I have never heard it called fizzy before but so apt.
Oh, I get so much from our forum, I am not alone being the best feeling, thanks all.
Hi all,thankyou for all your posts. It helps to see that others are questioning all sorts around their diagnosis. I have recently been diagnosed with MGUS and latest blood tests show a rise in paraprotein level that has frightened me if I’m honest. Searching for info on the internet hasn’t helped my understanding either. I’m told I’m still low risk but had a variety of symptoms over the last two years following COVID in January 21. I’m new to the forum but it has been super helpful to read about how you all feel and that the anxiety I feel just now is ok.