Paraproteins : Following a blood kidney... - British Heart Fou...

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Paraproteins

Gooner1947 profile image
12 Replies

Following a blood kidney function test some paraproteins discovered. GP mentioned 20 but can't recall what that was about.Was referred to Haematologist who I saw yesterday.

It could be one of 3 things. MGUS, Lymphoma or Myeloma.

I cannot handle MRI as far too claustrophobic. I just can't.

She is arranging for a full skeletal CT scan. Also a bone marrow biopsy.

In the meantime I am having my coronary angiogram next Wednesday 16th.

I've a lot going on and feeling a bit daunted by it all.

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Gooner1947 profile image
Gooner1947
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12 Replies
SandraLlew profile image
SandraLlew

Sorry to hear that you have more health issues going on and it can be overwhelming, if you have any of these conditions it has now been found and you can be given treatments for them/it. It is all doable, I have done heart and cancer this year and sent T2 diabetes into remission. We are all different and how we handle things is also different and the support of family and friends can be very useful.

For me I have to have information, both good and bad so I know what I'm actually facing, rather than imagining scenarios; there are others who don't want to know and seem to pretend it's not happening.

You are having a thorough MOT and as a consequence things may pop up that were unknown as there were no symptoms. I hope it all goes well for you and I am sure that everyone here has your back and will do what we can to get you through it all.

Gooner1947 profile image
Gooner1947 in reply toSandraLlew

Thank you for your very encouraging reply. Yes, I too like to know what's going on.I had non hodgkins lymphoma and 8 cycles chemo back in 2007. Knowing all about it, so to speak, did help me in my response to treatment etc.

Thanks for your support.

Taviterry profile image
Taviterry in reply toGooner1947

Yes, you're having a tough time and all those medical terms can't help, especially if you were told them verbally. I find that while I'm assimilating one fact, the doctor has moved onto the next.

Your thread is titled "Paraproteins". I spent some time researching them early this year after I was told I had an "IgM kappa paraprotein to be treated as MGUS" but it was too small to quantify. But there was an IgG reading of 12.9, the range being 7 to 10 but I'm not much the wiser. PLEASE DO NOT COMPARE THIS WITH THE "20" YOUR GP REFERRED TO, AS THEY COULD BE DIFFERENT THINGS. I too suspected Myeloma (which is linked in a very few instances to heart-valve replacement) but my haematologist reassured me that this was not the case.

Most of my blood readings aren't bad, if not ideal, and since my referral to him 11 months ago the haematologist has yet to explain why I suffer such fatigue.

There's more info about MGUS here: bloodcancer.org.uk/understa...

You'll see there are five types of paraprotein: IgG, IgA, IgM, IgD and IgE.

TBH I find this subject very confusing, especially when it comes to "light chains".

DodgyTickerMum profile image
DodgyTickerMum

Bless You. I hope your scan goes ok and you cope with it better than an M.R.I. Having the scan and the bone marrow aspirate will give you the definitive answers you need. It was what diagnosed my Hubby’s M.G.U.S. last year. He’s currently awaiting his 6 monthly results, so we can empathise with your situation.

I hope your angiogram goes well next week. The procedure itself is nothing to worry about. You can request a light sedative to relax you if need be. You’ll be back on the ward having tea and toast before you know it.

Keep us updated of your results. We’ll have our fingers crossed for some good news. 🤞🏻

Gooner1947 profile image
Gooner1947 in reply toDodgyTickerMum

Thank you for your words of encouragement. It's every much appreciated.

Taviterry profile image
Taviterry

Your first post illustrates the dilemma medical staff have when giving a patient information about their condition - give a brief summary or go into details that we may not grasp, especially when they're verbal. Back in 1996 the need for my sub-cranial op was described in a vague way that puzzled my nurse-cousin and her doctor. And I think Google, had it existed then,would have struggled to help. (Few of us used the Internet in those days, probably just as well, as years later I looked up the op I had had and shuddered at what might have happened, even compared with my recent TAVI.)

Anothernewbie profile image
Anothernewbie

Gosh, you are having a rough time right now.

Paraproteins were discovered in my blood 13 years ago. The figure of 20 is the count of how many paras in a certain volume of blood and is not very high, and is only one of several measures, such total blood count, red cells, white cells, sodium, and many more. I was monitored, I had a full body x-ray and was booked for a bone marrow test. I didn't have it because of a change in personal circumstances and could not face it, but the haematologist said that even if I had it they would not do anything about it, it is just an information procedure. Mine is MGUS and I was told that if it does turn aggressive it will lead to myeloma.

At the start I was monitored, by blood tests, every two months, then 4, then 6 for several years and now annually. Paras varied between 19 and 23.

My last one was last month, and paraproteins - 20!

As you can see. I have been lucky and I hope you are. There is absolutely nothing that you can do to check on its stability or progress, the only way is a blood test.

Good luck.

Gooner1947 profile image
Gooner1947 in reply toAnothernewbie

Thank you so much for that. There was so much to take in that I forgot what the significance of '20' was but you've explained it well!I'm glad she, the haematologist, understood my anxiety with MRI and is arranging a full skeletal CT scan instead. I'm not too bad with CT.

I also assume the bone marrow biopsy will help too.

It's just I have so much going on recently. Next Wednesday I have the coronary angiogram. The TAVI will be a further 5 months wait I think.

The biopsy is on 2nd December. Hoping the CT scan will be soon.

Once again thank you

Avagra profile image
Avagra

Hi Gooner1947 I’m aged 75yrs and have gone through an MRI 6 weeks ago with results still to be released.It is very difficult if you can’t stand enclosed spaces and it took mine 75 mins.Ive had angiograms with stents etc and they are quite pain free taking about half an hour so don’t worry about it.Keep the group in the loop and all the best xx

Gooner1947 profile image
Gooner1947 in reply toAvagra

Thank you

wilelo profile image
wilelo

Hi I was old I had these paraproteins by my GP after annual bloodtest.He mentioned possible Muslims but seemed I concerned.I asked to speak to his pain go and she told me that they see lots of these results and they don't lead to anything .Asked if I wanted to be refered to a haematologist I said no thanks.That was 6 years ago,no problems.Hope all goes well for you.

wilelo profile image
wilelo

Muslims !!!!paraproteins bloody technology.

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