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Hi everyone, I wonder if you might be able to give me your knowledgeable opinions? I saw my gastro intestinal consultant on Friday whom I have been under for just over 6 months. I last saw her 3 months ago and she noticed the results of a blood test I had done as an in patient when I had had a series of recurrent infections (pneumonia and kidney). The test showed raised levels of iga paraprotein. She asked for the test to be repeated following recovery from the infections and I got the results on Friday which show it is still raised and she has asked for it to be done again. I looked across at my notes and I’m sure it was 70 on one and 73 on the other but I don’t know what that’s out of and it means nothing to me but I could be wrong on the levels as I may have looked at the wrong thing! I’m a naturally inquisitive kind of person and so as you do, I came home and googled raised iga paraprotein, and everywhere it says it is the tumour protein in MM. Naturally I’m now panicking that it’s MM and if it is likely to be, I want to know asap and want treating. I have no major symptoms but I do have a few alarm bells, I’ve dropped from 10 and three quarters of a stone to 8 and a quarter in 6 months without trying, I have a ridiculously sore, raw and ulcerated tongue which calms down intermitantly and then flares up again, I have a really painful rib on the right hand side that gives off a constant dull ache and feels like toothache when I touch it and I have a lot of nausea. I’ve booked to see my GP on Thursday. Should I be pushing to get the blood tests done urgently as the waiting list for bloods is currently about 3 weeks. Am I being over anxious?
Thank you in advance for any replies.
PS I’m 44, female, non smoker (gave up 20 years ago) and pretty much t total. I have 3 children, eldest 17 and youngest 8.
For what it’s worth I’d push and ask for an X-ray too on your rib.
It could be nothing or it could be something but either way push.
My husbands had leg pain and had physio. It snapped. A simple X-ray may have prevented the break. Wouldn’t have changed the MM but would have made round 1 treatment simpler to deal with.
Hi fozz, I am sure you have read that people can be diagnosed from recurrent infections (from compromised immune system) and you could be putting two and two together with a painful rib and coming up with MM but if it was me knowing what I know now, bearing in mind I believed a labyrinthitis diagnosis for months, I would be at the Doctors demanding tests ASAP specifically for MM. Some people do experience weight loss with MM and is often their first sign of a relapse – I have never lost weight with it – tho as you have had pneumonia and a kidney infection would you not be inclined to lose some weight due to feeling too ill to eat at times? At one time I would say at 44 MM is a real long shot but I was 50 and since then have heard of very young people being diagnosed. The raised iga would probably be expected when fighting an infection ( how much raised I do not know). I think you have sufficient concerns/symptoms to demand/request test ASAP as well as an xray initially on you rib. Hopefully, it will be a lot of coincidences but, if it isn’t, you want to be diagnosed and monitored ASAP in order that damage to the body is minimised. Don’t take no for answer, learn to be assertive now, it will put you in good stead. Have you had any night sweats? It is good that you are not burying your head in the sand and I wish you good luck and hope it is just a series of coincidences but better to check it all out ASAP.
Rebecca
Rebecca
Thank you for your replies. I saw the doc last week and they didn’t have the iga levels on their system and they’re trying to get them. I also phoned my gastro consultants secretary as it was the gastro consultants tests that found the raised iga and I’m still waiting to here from her too. Meanwhile I’m struck with another hideous chest infection so going back to doc tonight.
Hi Fuzz,
How was your appointment with your GP? Did you push for blood results? Your immunity must be low at present for you to have another chest infection, sores on your tongue and kidney infection. Hopefully all of your aches, pains and infections might be nothing serious. But you need to press for further tests to try to determine the precise reasons for your raised iga levels, which might just be a response to your immune system being exposed to infection, a virus or bacteria.
Myeloma can be so difficult to diagnose because of the various symptoms which are presented by individuals and the type/degree of myeloma. In the 12 months prior to my diagnosis with myeloma aged 53 years, I had three chest infections, an aching kidney, rib pain and the occasional “odd” pains in various parts of my body around my groin, pelvis and back together with hot flushes. I just put the aches and pains down to my working too hard and thought I just needed a good rest. When my pains increased in my kidney, I was referred to a kidney specialist for suspected kidney stones. I had a CT scan, with kidney stones being ruled out and when my rib pain increased, I was referred to a gastro specialist who thought I had gall stones or stomach ulcer which further tests ruled out. It was not until three vertebrae in my back collapsed that an MRI scan was ordered, which showed several lesions in my bones with the radiologist suggesting possible myeloma. As suggested by Fiona, I would certainly press for further investigations if your rib pain continues, especially an MRI scan.
I hope you find some answers to all of your aches, pains and infections.
Regards Jan x
Hi Fuzz
Well you are showing some signs,that could be a number of diseases,a simple blood and urine test should show the possibility of Myeloma.
Doctors only come across Myeloma once in a life time as there are only 3000 cases a year in GB.
I would make a note of your weight and height,plus how many times you feel sick,your kidney functions should be checked also, Myeloma does not show on small bones,it will show any brakes in bones, and that is very painful!!!
I would ask your GP have they considered Myeloma,because you are worried about you symptoms,if your not happy with the reply,ask for second opinion.
You only have one life
Thank you for your replies Jan and Eve. I’m still trying to get hold of my results, it’s been a bit of a battle trying to get the iga results out of them. I had the bloods done on Tuesday and by Thursday I was so poorly with chest they admitted me, the hospital sent me home to continue with antibiotics after taking a chest xray and confirming that I had infection on the bottom of my right lung. Phoned for blood results on Friday and the receptionist said she couldn’t give me the results, I needed to speak to the doc and he was in surgery and would ring me Monday. I argued with her but got nowhere. Hopefully I should get the results Monday, if I don’t I’ll be stamping my feet. It’s so maddening knowing my results are sitting in the computer and no-one will tell me them! If I know what my iga level is and know if it’s still raised then I will certainly push for further testing….it’s such a frustrating waiting game!
Hi there
Blimey they are giving you the run around. On a positive note I would have thought if mm was in the frame they might have told you in hospital? I would like to guess. There are so many illnesses with similar symptoms. It’s worth remembering that mm is an exceptional diagnosis as it’s very rare, however that said since Colin was diagnosed I have discovered 4 people locally!
I would make an urgent appointment with you Gp and insist they go through all of the results!
Best of luck
Vicki
Hi,
I’m still getting no answers. I still haven’t had the results of the last blood test to check the iga paraprotein level. I phoned the doc today and she said he isn’t in today but will get him to chase the results tomorrow and phone me. Meanwhile I’m on my 2nd course of antibiotics for my chest and still no improvement. My full blood count results are back though and showed that my white blood cells and neutrophils are very low, my haemoglobin is still low but hasn’t got any lower. I think the lack of neutrophils and wbc’s explain the inability to fight infection but as yet I don’t know what explains the raised iga, low haemoglobin, low neutrophils and wbc’s. Hoping for answers soon!
Fozz. x
Hi again,
I’ve finally got a little bit more information about my blood test results. My iga is unchanged (from what I don’t know and it doesn’t show on screen what level it’s at apparently!), my igg is unchanged (but is apparently low) and my igm has increased by 8%. Does all this mean anything without the actual levels?
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