Waiting 3 weeks for mri so is it good not hearing yet or is it bad news regarding having to wait nervously.?
My mgus diagnosis was from abnormal paraproteins the locum said, so sent report to specialist or i formed dr tell me its mgus.
So still unsure low high mid ,not seen a Haematologist at all .
What’s next anyone please
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HI@Kevin1,was it a locum at your GP surgery?you could ask the secretary to e mail your blood test results and then see what level the paraprotein is ,it will have a name, mine is IGg Kappa .No I think 3 week’s is probably ok in the current way of things being delayed.Can you ask your GP if he /she has heard anything?My GP wrote to the Haematologist and got written advice.I dont have to see the Haematologist unless the paraprotein increases rapidly .Paraprotein levels can increase but can also stay low so you need to be reassured. Advice was to test my blood every 12 weeks until it settles.I think you are entitled to ask for your result by now then you can ask @GemmaBloodCancerUK what it means or ask Myeloma support line .Funny you should post was wondering if you’d shared with your children.
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Hi @Kevin1 waiting is so horrible isn’t it.
@Bannanacake has responded to you so comprehensibly that I cannot follow it.
Please let us know how you get on and look after yourself.
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Hello @Kevin1, sorry to hear that you are having to wait so long to get some clarity. Can I just check whether you are still waiting to have the scan or waiting for the results?
Usually with MGUS the Haematology team advise the GP on the diagnosis, monitoring and parameters for escalation. Many patients don’t ever see a Haematologist but I would definately ask your GP for their recommendations.
Here are our webpages regardinging MGUS Monoclonal gammopathy of undetermined significance (MGUS) | Blood Cancer UK and also a resource from our colleages at Myeloma UK:
https://www.myeloma.org.uk/wp-content/uploads/2018/03/Myeloma-UK-MGUS-Infosheet.pdf
Don’t hesistate to get in touch if you would like further support: How to contact Blood Cancer UK | Blood Cancer UK
Kind regards
Gemma
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Hi,thank you for reply, matter of fact i didn’t yet raise with the kids.
Not because I couldn’t, more of case off waiting for MRI results
At least i can reassure them that all tests scans have been done,that’s why wotch and wait.
Cheers kev
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Hi there, yes MRI results waiting for
Oh i see thanks for your feedback
Kev
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Hi@Kevin1,hopefully not too much longer,thanks for posting
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Hi @Kevin1 Any hope of your MRI results yet?
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Hi@Kevin1, I hope you have had your results by now so it can do away with the waiting and wondering.
Bannanacake
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Hi Sorry late reply, been hospital appointment busyness,
Unfortunately zero MRI results as yet ,i do have two four day IVIG treatment’s soon in July then August, plus Osophagael momentary test plus barium swallowing test with xrays.
Thanks again Kevin
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Hi many thanks for your post,MRI still waiting results.
Got two rounds of Ivig treatment soon for my GBS/MMNCB, and some swallowing procedures too endure july.
Regards Kevin
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Hi @Kevin1 please do let us know how you are getting on, look after yourself
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Hi@Kevin1 thank you for the update you have been pretty busy at the Hospital thats for sure.I hope the IVIG treatments are effective and that the Barium swallows are not too horrible, you are very brave going through all that and you’ve had such a lot to deal with ,the noisy MRI for one thing and still no result.Wishing you all the best .Take care and keep posting .
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Question anybody? Iam due IVIG infusion soon in July and August. So when I have my next blood test regarding Mgus diagnosis and paraproteins levels.
Wondering if effects my blood work
Thanks again kev
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Oh that’s too medical for me I will copy your post to @GemmaBloodCancerUK and @LauranBloodCancerUK
Take care of yourself
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Hi @Kevin1,
Thank you for your question. Essentially the answer is yes it can affect your blood values. We understand that IVIG infusions can affect a variety of serum chemistry and blood values either directly or artifactually by interfering with the laboratory method. Low levels of white cell counts can be seen, and may play a role in the immunomodulating effect of IVIG.
It may be a good idea, if you have not already to direct this question to your treatment team kevin as they will be able to offer you are a better understanding of this on an individualised basis where blood results can be explained and a comparison offered.
I hope this somewhat helps and do not hesitate to contact our support team should you need to talk anything through- 0808 2080 888.
Take Care, Lauran
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Thanks for your time to post much appreciated.
Kev
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Hi @Kevin1 I have been thinking about you how are you doing?
Look after yourself
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