New diagnosis of MGUS IGM- possible peripheral neuropathy also

Hi all,

After a few odd months health wise, it was thought I had developed Lyme disease and then possible Covid I noticed I started feeling out of breath, was aching, partly tingling tongue and partly numb foot and dizziness.

My first blood test returned a slightly elevated liver reading so waited 4 weeks and retested again.

GP called me and told me I had something called MGUS, just that it is rare it develops to cancer.

After a couple of days I regrouped my thoughts and asked for my bloods.

It showed my B12 was at 212, only just above the 190 minimum. This would explain the aches I have, the GP wouldn’t give me b12 shots. I told him to speak to a haematologist. The GP admitted I was right and I have just had 21 days of B12 shots.

As well as a flu shot. My symptoms have worsened, but apparently this is common whilst the B12 shots do their thing.

Apparently Peripheral Neuropathy is common in IGM MGUS lambda, even though most MGUS literature in the UK states its symptom free.

I am on 6 month checks.

The reason I am writing is I am all screwed up mentally, I have minor Aspergers and my thoughts are all over the place.

I am snapping at my wife, isolating myself, worrying about the future etc. I have a profoundly autistic son, so worry about the future anyway.

Every ache I have or new feeling, I am thinking things are getting worse.

I feel like my feelings have been ignored. Everyone around me is carrying on like normal. I have had therapy before a couple of times so am emotionally very open, studied Sociology and understand the human condition, but when others don’t it’s hard.

I think you all will understand me…

It’s important to say that I know I can’t do anything about the risk of cancer, short of getting fit, staying stress free. It’s more about the aches in my body.

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Hello @Kevin. First of all, a very big welcome to this forum. I am so glad you have found us at this extremely difficult time for you. I hope you will find it a friendly and supportive place where you can express your feelings and know that we will do our best to understand. Although we all have different blood cancers, we often share the same emotions and challenges. I feel for you so much, especially with the concerns you already have for your son. I remember clearly when I was diagnosed with a different blood cancer to you, but a lot of what you are describing sounds the same. Please keep sharing, if you feel able, and let us know how you are doing. Be kind to yourself and don’t forget that living with constant pain is very draining in itself, apart from trying to come to terms with the diagnosis you have just been given. I hope your pain and symptoms start to ease and if you would like to speak to someone you can call the Blood Cancer UK Support Team on 0808 2080 888.
Warm wishes. Willow

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Hi @Kev, a great big welcome to our forum and @Willow has brilliantly replied to you.
I could have written just how you are thinking and feeling when I was first diagnosed with another blood cancer although I am useless on the medical and blood tests side.
I also felt in a sort of parallel isolated universe with the whole world going on as normal around me so I certainly understand you. My husband doesn’t do feelings and goes around with his head in the sand.
I was diagnosed in 2003 and over the years my heightened emotions have calmed down a bit, although during this year of Covid they immediately heightened again and I got so excited at getting an on line delivery slot then I am in tears the next minute.
I also get anxious every time I get a symptom and before , during and after medical appointments.
I also have to write a list of my symptoms and questions I want to ask my medical team and this can include my fears as well.
Take care, let us know how you are doing as I am sure so many people will relate to you.

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I’m not too bad thanks. Had yet another sinus headache yesterday, worst thing is they are so random.

Woke up today and feel good.

Thanks for replies so far, the main thing I need to hear is how you all felt upon diagnosis

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So understandable you feel like you need to hear how others felt upon diagnosis of MGUS! In case it’s helpful, here’s two other conversations around MGUS -

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Stunned how little response there is here?

Are there any other forums around?

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Oh @Kev, I am sorry you do not feel you have got the responses you were hoping for on our forum, I hope you get some more responses soon. How are you doing and feeling now ? Take care.

I have been thinking about what you wrote during the day.
I think on this site sometimes we do not even know which blood cancers each other has and a diagnosis does as you so rightly put it screw us up mentally.
I remember snapping at everyone, nobody could do or say anything right, I was worrying about the future and what really got to me was that the world seemed to be going on around me normally.
At that time I certainly had not heard of anyone else with leukaemia.
As for being put on 3 monthly checks, why weren’t they operating or giving me medication to make me better???
I am really impressed with you as I would never have thought of or dared ask for my blood test results.
My thoughts and feelings were on high alert for absolutely ages and I still get anxious with aches and pains and before and during tests and appointments 16 yrs on.
Have you any handy hints on trying to keep stress free and fitter.

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Hi @Kev I’m so sorry you’re feeling like your feelings are being ignored and that your thoughts are all over the place. It’s good to hear you had therapy a couple of times - did you find this helpful? Is it something you might want to look into again to support you through this time? Have you spoken to your GP or anyone else in your healthcare team about how you’re feeling and your worries about the future - they may be able to help you get some support at this time and going forwards.

It’s totally understandable you’re keen to chat to other’s with this diagnosis. You’re certainly not alone in feeling as though your feelings are being ignored, it must be really hard. I hope other people diagnosed with MGUS will join this conversation and share how they felt at the time. I’ll pin it to the top of the forum home page so it’s visible! Did you look at the other conversations around MGUS I posted some links to?
Do give us a call if you want to chat things through!

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Thanks for your comments. Until I see my haematologist for the first time next week I have no support.

It’s more about the aches I am feeling that are getting me down.

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Hi @Kev. please let us know how the visit to your haematologist goes next week and perhaps tell them about every ache you are experiencing and that they are really getting you down and how you have been really feeling.
I look forward to hearing from you again.

Really glad you’re seeing a haematologist - as Erica says, don’t be afraid to tell them everything you’re experiencing and any symptoms you’re experiencing and/or worried about!
Let us know how your appointment goes if you feel up to it.

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Lol. Don’t worry. I don’t scare easily. My GP
Wouldn’t send me to the haematologist until I provided evidence why he was wrong and urged him to check. He apologised…

Going to write everything that’s happened.

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Hi @Kev you’ve come to the right place to tell people how you are feeling. A lot of people on here have blood cancers and whilst we don’t all have the same condition, we do all understand the physical and mental challenges that people on here are going through. I’m glad that you managed to get to see a haematologist. I had to fight to get taken seriously when I got ill but it was the other way around for me. My GP took me seriously but the hospital didn’t and just told me I had back pain and wanted to get rid of me without bothering to do any investigation. Luckily for me one doctor was prepared to consider an MRI if only to prove me wrong and I got a Myeloma diagnosis. Even though I’m in remission I often get bone pains and can’t always be as mobile as I like but I can understand the mental challenges especially with the way things have been this year. Do keep us updated on your progress and don’t be afraid to rant!

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Hi I just saw your post. I was diagnosed slightly increased IgM kappa MGUS recently as well. 6 month bloods are in December. I have very high health anxiety to begin with so this screws my mind terribly just knowing. I am low risk according to hematologist- due to the very slight elevation and all other #s ok. I 100% agree with the aches- and every little thing makes me think it’s getting worse. Terrified of next month- and I’m sure will be every time. You are not alone so never feel that way!

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Hi I hope your doing ok…I Have a different blood cancer ET…but all the same feelings of uncertainty and concern. That’s something we all can relate to… I often get restless nights…feeling of being overwhelmed. Sometimes to the point were I think I can’t cope…it’s awful . I’m.on medication low dose chemo medication which I have taken for 18 months. It’s working but its also making me vulnerable to infection. So I’m shielding…no family and carer for my elderly mum…
You sound so clear and focused and hope your haemotology appt goes well… my haemotology dept have been helpful and can’t fault them for their care. I’m just lacking motivation today. Best of luck thank you for your story and sharing it

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Hi @Clovy14, @Hmc63 and @Kev and as @Clovy14 says you are not alone on this forum and we are here to support each other (virtually) through whatever we have going on and if you would like to talk to someone you can contact our Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk.
I was diagnosed 16yrs ago and I still feel anxious at every symptom and twinge and at medical appointment times, I think I always will.
During lockdown I think my mind has gone into overdrive, take care, we all understand and if you don’t post we can’t support each other.

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@Kev Hi Kev, hope all is okay with you? not sure if you might have already seen the haematologist yet, but if so, hope that all went okay there?

@Hmc63 it does sound like you have so much on, especially as you, not having family around you and also being carer for your mum. It’s so understandable to have days where you’re not feeling as motivated, hope you’ve been feeling better over the last few days?

@Erica Erica, we can only imagine, there’ll be so many people who can relate to how you’re feeling, with your mind working overtime. It’s only natural to feel like this, especially with the ongoing uncertainty of this situation, I do hope you’re okay and have founds way to give yourself a break and your mind a good rest?

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I think I feel very paranoid about everything now, whereas before I would have brushed it off. I get lots of aches and pains especially in my knees and back. Every time I have a dose of Zometa I end up feverish the next day. This week I also got really panicky about a lump on the side of my neck. It’s been causing me some discomfort so I booked in an appointment with my GP. Luckily it’s just a disfiguring lump I’m stuck with and no danger. I wonder if I’ll turn into the boy who cried wolf? I never used to be like this.

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