What's this now - more trouble? - Pernicious Anaemi...

Pernicious Anaemia Society

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What's this now - more trouble?

beginner1
beginner1

I've just had a [planned] phone call from a nurse from the, out of county, hospital who are going to treat 'my bones.'

She was going through what I had B12D etc., apart from the osteoporosis, and listed MGUS. I asked what it was - answer "A blood disorder."

Noone at my surgery had told me I had it and I'm wondering why and what it is and does it have any connection to vit.B 12 D.

23 Replies
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That is a frankly unacceptable explanation. People who don't know shouldn't be in the position of explaining.

I don't know but I'm not going to try to explain. Just post a link:

MGUS

MGUS (monoclonal gammopathy of unknown significance) is a non-cancerous condition where the body makes an abnormal protein, called a paraprotein.

macmillan.org.uk/cancer-inf...

beginner1
beginner1 in reply to helvella

Thanks for the link.

Yes but if she had not mentioned it I would never have known. I'm presuming it showed up in my last blood test which was in January or early Feb. [I don't have a copy - blame Covid]

I found this and several more sites "An autoimmune condition called pernicious anaemia appears to increase the risk of myeloma and MGUS."

That's awful not to have a proper rexplanation. Or indeed knowledge this was on tour notes!!

You should have known about it . I should be monitored. That’s shocking .

Cherylclaire
CherylclaireForum Support

I wonder how long you have had this condition, and what the test was, since they haven't ever mentioned it, or whether there is treatment for it ?

That must've come as a bit of a shock, beginner1.

Going to read helvella's link now.

Autoimmune disease

MGUS

"Autoimmune diseases cause the body’s immune system to attack healthy cells in the body by mistake. Some autoimmune disorders may slightly increase the risk of developing MGUS. These include lupus and pernicious anaemia." [from Helvella's link.]

HA - So much for 'you do not have PA, your IF test was negative. You do not need any more injections after the 'generous 5 we gave you.'

Cherylclaire
CherylclaireForum Support in reply to beginner1

Part of you wants to say "I told you so", and part of you just wants to bite them like a rabid dog !

'Rabid dog' is just right. I should get myself a large badge which says 'Remember the time you said that was 'normal', and that time . . . . . '

But slowly the GP's here are getting better. Still one 'horror' to go.

Cherylclaire
CherylclaireForum Support in reply to beginner1

Find the best one for you, the one you trust to help you, then never see another one even if you have to wait a bit. The only time I didn't follow my instinct on this (GP on holiday when my heartbeat went awry) I ended up getting my NHS injections stopped.

Wonder what is meant by "slightly" ? Haven't heard of MGUS on here before, have you ?

No never heard of MGUS before - it sounds like a pre condition. I'm not bothered about it, time will probably catch up with me before it did [if it was going to]

I am interested in why they did not tell me when they got my blood test back. Probably Covid coping, the test was done about the start of it Jan. or early Feb. or it was the bloke who says 'everything is normal, or it's old age.' I think it probably confirms that I have PA though.

My 'go to' choice of GP only does Monday and Tuesday, is very conscientious and very overbooked, but the other two were very good about my broken bones.

Surprise, not shock. I'm more interested in when my garden nursery is going to bring out next years' catalogue and where to put the plants I will fall for. Or where I can buy a waterbutt and garden hoe, they have sold out locally.

Cherylclaire
CherylclaireForum Support in reply to beginner1

... I'm still going to read helvella's link !

Me too.

I got a Dutch hoe in Wickes at the weekend. 😉

Tried there sold out but thanks for the thought'

Hi,

They should have told you about MGUS before and given you a proper explanation.

MGUS should be monitored as there can be an increased chance of a type of cancer developing for some people with it.

In a similar situation, I'd probably write a letter to GP asking for an explanation of MGUS at next appointment.

Mayo Clinic (US) link about MGUS.

mayoclinic.org/diseases-con...

As you mentioned you're in Gloucestershire, this link may be of interest.

swscn.org.uk/wp/wp-content/...

I will probably mention it. I've found that the 3 newish female GP's do listen and have treated me quite well. One male is pleasant but if you went in with 2 heads he would think 'normal' and the other one is - - - -.

I was given this diagnosis a few months ago. My understanding was that a blood sample found a particular monoclone and so they were looking for Bence Jones proteins in my urine but didn’t find them. This resulted in the MGUS diagnosis - Monoclonal gammopathy of unknown significance. It is not a cancer but people with it are at a SLIGHTLY higher risk of developing myeloma which is. If you are anything like me you will be monitored every six months and my monitoring is now as I had blood samples taken yesterday and the Haematologist is due to telephone me this very afternoon.

Doctor Google has loads of information about it.

It appears it isn’t usually a cause for concern.

This is what I have managed to discover. My retired GP friend merely said the unknown significance is because they don’t know what will happen, don’t panic.

I am now 76 so something is going to see me off, I am just going about my normal life.

beginner1
beginner1 in reply to kcbrecks

Hi kcbrecks thanks for the reply. I'm not bothered either, just interested.

I guess my surgery is not bothered either as they 'forgot' to tell me and as the blood test was in Jan. or early Feb. are not going to 'bother' with check ups either.

As I'm ancient I too will go on with as much normal life as one can get with Covid19 around.

You were quite fortunate then. When I got the letter from the neurologist I have to admit it frightened the xxxx out of me. Until there was a negative test for the Bence Jones proteins I was almost putting my house in order.

I am expecting a very short conversation with the haematologist this afternoon just to say all is fine. But as they have trouble getting blood out of my veins without using the back of my hand I would prefer they didn’t check up quite so regularly.

I have just had the telephone call. The protein result has not come back yet but the other two tests, kidneys etc, were fine. He doesn’t expect there to have been any movement in the protein level so unless there is, when he will the contact me, they will leave the next monitoring until 12 months.

All is well if they will leave it on the back burner.

beginner1
beginner1 in reply to kcbrecks

I wonder if MGUS is the reason why my balance has not improved with B12 injections although my legs which were numb have come back to life. I wonder if my reflexes have.

kcbrecks
kcbrecks in reply to beginner1

All the things I have read are suggesting it to have no effect on anything. The amount of the monoclone although said to be elevated is still very tiny. The haematologist said you wouldn’t know it was there without it being found in a blood sample.

The study which found it was after the consultation with the neurologist and it is fairly obvious from the studies she ordered that she was looking to find the source of all of the various aches and pains I have accompanying the peripheral neuropathy.

They are sure that the pains in my hands are also caused by carpal tunnel problems and have suggested they refer me to the relevant surgeon.

They are also sure I have some problems which come from trapped nerves in both elbows. The suggestion for that is a session with the orthopaedic surgeons.

They didn’t look far enough back in my records as they would have discovered I have a spondylosis in my neck from a whiplash injury forty years ago and I have just put up with that one as doing anything about it has the risk of paralysis.

I only mention these because this consultation about my peripheral neuropathy has shown up the difficulty of being able to distinguish which of life’s injuries through just living are causing some of our problems now.

If there were magic bullets then it looks as though we would need a machine gun to fire them from a continuous belt as we get older.

I am debating with myself as to if I want to let the surgeons have their way with me or put up with the discomforts. Anyway the current concentration on Covid means it would be a long time before anything could be done.

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