Doctor frustration

Hi@Kevin1,are your IgM blood results given in g/l or gd/l its confusing isnt it?The mystery of MGUS !

It sounds as though your Medical Team are looking out for you with another MRI planned but as always talk to your Dr for confirmation and reassurance. (Hooefully).Pataproteins can go up and down,although mine just go up at the moment :thinking:. I hope youre all set as you say you will “get through”,I was thinking about that “getting through” and what helps each one of us get through.
All the best .

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Hi@KevinI Its g/dl ,now I know Im a bit dyslexic,adding to the confusion, sorry.

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Afternoon all,
Latest news had Ivig treatment this week, but horrendous side effects, migraines, nausea, low blood pressure.
So my last day Thursday, they made clinical decisions to postpone, so was sent home to rest up.
My new MRI appointment 4th August too check in depth Thoracic spine Sacral area and lumbar area.
Regards all of you kev

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Hi @Kevin1,
Sorry to hear that you had such a horrible side effects to the IVIG treatment. It sound slike a rest is very much in order.
I am glad that you are having some imaging taken on the 4th and hopefully this can give you some answers.
Do give us a call if you need support or to talk things through: How to contact Blood Cancer UK | Blood Cancer UK
Kind regards
Gemma

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That’s sounds horrible. I hope you are taking care of yourself. Hope you start to feel a little better soon.

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Oh @Kevin1 your side effects sound horrible, yes, I really think that you deserve to rest up.
Please let us know how your MRI appointment goes on the 4th.
We are here and if you would like to talk to someone the Blood Cancer Support line is there for you.
If your symptoms change perhaps contact your medical team.
Really look after yourself.

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Good morning all.
Yesterday had MRI scans Lumber Thoracic Sacrum so waiting for results unsure on time line but i gather MDT are looking soon as.
More blood tests done yesterday so wait see .
Really bad at technology gadgets so hopefully you all see this post,30 plus yrs ago we had Teletext i only just mastered that now .
Regards kev

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Hi@Kevin1,yes I remembered yesterday was “the day” and was thinking of you and hoping the MRI wasnt too "clunky "and “bangy” fa :pensive: hope you had a treat for afterwords.
It was good to hear it all went ahead.Yet more bloods but hopefully you will get results soon.
You are doing great with the postings by the way.
So hope to hear you are doing well and hiw

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Well @Kevin1 ,look at me message gone before I can finish !!! :open_mouth: Was saying how are your family doing with all your tests going on .
All the best
Bannanacake

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Hi too be honest all though my kids are older ,i play all hospital visits and why,s and nots i there
Obviously I worry everyday, waiting for good or bad news, but I like everything up front.
Also results for Barium swallowing test ,a camera up nose into stomach (momentary i think)
Regards Kevin

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Yes @Kevin1,I think as Parents its a fine line to tread,mine are all adults too but your kids are always your kids so you want to protect them without too much worry for them. Sure it is a worry waiting for results, its great to have the forum where others understand. I hope you get the Barium swallow soon and can find something to take your mind off the waiting.
Keep posting and take care :blush:

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Hi @Kevin1 I think that you are doing really well with your posting, and yes, I remember teletext. I also remember carbon paper and tipex
I really appreciate your update.
You certainly seem to be having some tests which is good.
Your kids are always your kids and those protective instincts don’t go away.
Yes, please update us as and when.
Really look after yourself

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Good morning all,
Update as far ,phone call yesterday afternoon from Oncologist as result of my recent MRI, i have a lump on spine area for years (lipoma) i was told 40 plus years ago,however it seemed to growed and more painful.
MRI is suggesting its ok ,however getting surgically removed by plastic surgeon, apparently then sent to histology dept to check
Still unsure if this is why i have lower back pain hip ribs ,over whelming fatigue is related, or something else needs investigation.
So waiting for Doctor referral 2wk
Latest bloods was lower than before o.35gl so mgus wotchin wait.
Think i explained ok
Regards stressful Kevin

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Good morning,
Wonder if you or someone can enlighten me on mgus diagnosis.
Blood tests 17th March this year my kappa light chain was 19.66mg/l also igm reading was 0.41g/l,so had phone call you have mgus,!wotchin and wait
So 6th July had blood tests again igm was 0.35g/l.
Is this Concerning? Or normal to go down than up regards Kevin

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Hi @Kevin1, I’m sorry to hear you’re going through what sounds like a stressful time. It can be so difficult undergoing tests and waiting to see the doctor, it can certainly take up a lot of our headspace and it’s understandable for you to be finding this stressful. Please do remember our Support Team are here if you’d like to talk any of this over at all (0808 2080 888).

I’m not sure if you’ve seen this but just in case it’s helpful- Myeloma UK have an MGUS diary and an MGUS infosheet, which I’ve linked here. I’d encourage you to share your concerns about your test results with your doctor if you can, Kevin, but I’ll also tag our Nurse Advisors @GemmaBloodCancerUK , @LauranBloodCancerUK and @Heidi_BloodCancerUK in case they have any comments.

Best wishes,
Tanya.

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Hi Kevin1

Just read your latest posts.
If you are to have or have had your lipoma removed it cant cause you any problems in the future.
Whether it is the cause of your discomfort only time will tell.

If you are worried about your blood test results, you could ask at your consultant at your next appointment. If the consultant isnt concerned about them then this is a good indication that you dont need to worry, which is very difficult when everything is all scary and you have no concept whether the difference between two tests results is significant or not.

When I was first found to have igM mgus the levels in my blood were too small to quantify. Then suddenly they were at 2g/l, but the consultant wasnt at all concerned.
Helen

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Hi there @Kevin1, hoping that you are well? To my knowledge the levels for light chains and paraproteins can indeed go up and down. The main monitoring aim is to observe for significant and consistent rises in these levels. The resources that @TanyaBloodCancerUK sent through does mention this but if you do need further reassurance please do ask the health professional who is monitoring your bloods for you or call our support line: How to contact Blood Cancer UK | Blood Cancer UK
Kind regards
Gemma

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