Immunologists

Morning all,so sorry been not as updating active.Just had appointment after appointment then the worrying and Anxiety on why no news etc etc,
Awaiting MRI results, ultrasound sound appointment looming.
And my Dr wants me to have more blood work done for mgus, because immunologists want to view
Bloods for ige igm igg is this a thing ?
Regards Kevin

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Hi@Kevin1 been wondering how you are getting on.Yes I guess its good you are having more bloods done for MGUS and Im right with you on that one it is a worry.Hope you are finding some distractions in between all your appointments.
Keep posting and take care
Bannanacake

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Great to hear from you @Kevin1 you must be absolutely exhausted and still worried and anxious.
I find all appointments, tests and results so exhausting.
However I am impressed in the number of tests you are having.
I will copy your post to the Blood Cancer UK nurse advisers @BloodCancerUK_Nurses just in case they can add anything.
Look after yourself

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Good Morning @Kevin1
I hope you are okay.
Waiting for results and then needing more tests, then waiting again for those results, does add to the frustration of not knowing and more anxiety for you. Sorry this is happening.
However, I would see this as a good sign that the Doctor is being thorough by asking for more bloods. You could ask for the first set of results in the mean time, but often they need a complete set to be able to correctly advise you.
No news doesn’t mean it’s bad news. It may simply be the lab where your bloods are processed are very short staffed and so resulting these back to the Doctor may be taking a little longer (this is happening more and more unfortunately). Easy for me to say, but please try not to worry.

Yes, the tests asked for are Immunoglobulins (Ig are antibodies) there are 5 classes. I remember them as ‘gamed’; IgG, IgA. IgM. IgE. IgD. Each one has a different function as part of your immune response for fighting off bacteria and viruses. Depending on the levels of these in the blood, it can assist the Doctor with differential diagnosis, for example Autoimmune disorders, allergies, respiratory diseases. Your Doctor will be able to go through this in more detail with you, once your tests are back.

If you would like any advice or Support, please feel you can contact us:
(Blood cancer information and support by phone and email | Blood Cancer UK)

I hope I haven’t confused you, immunology is interesting but can be confusing!
Best wishes,
Heidi.

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Good morning all,
Thanks again for replies everyone there,yeah basically blood tests Monday and its again a barrage off testing
Immunoglobulin Kidney etc urine BJP ,i know some will take longer to come back due to complexity off testing.
Keep all informed
Regards kev

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Morning/afternoon depends on when view, just back tracking to early march this year.Blood tests and phone call you have MGUS (sorry what how when type etc) .Another check off bloods July Kevin watch wait (As I the patient panick mode anxiety) .Early October more blood work,after all this time off asking I find out it’s IGG Lambda.Serum protein electrophoresis (paraprotein present) Red blood cells abnormal low ,but on checking my last 5 results this always abnormal…? However abnormal IGM subclass -rd is currently being reviewed by immunology dept ? Any ideas greatfully needed as off why .
Regards Kev.

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Correction!
IgG4 subclass -rd

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Hi @Kevin1, thank you for your post, and I do hope you’re doing okay? Thank you for sharing this and I can appreciate it has been a difficult time for you with the investigations you’ve been having and waiting for the results, and so on. I’m afraid I cannot comment on the IgG results you’ve mentioned here- I do wonder whether you’ve had the chance to speak with your team about this at all to seek clarification? This may be worthwhile if you haven’t already. I will also tag our Nurse Advisors (@BloodCancerUK_Nurses) in case they have any further insights.

As always please do remember you’re very welcome to call our support line if you ever wish to talk anything over ( Blood cancer information and support by phone and email | Blood Cancer UK).

Best wishes,
Tanya.

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Good Morning @Kevin1 ,I totally get you wanting to get to the bottom of things on your latest findings.I am like a dog with a bone .
Thats good the latest result that youre being investigated.Have you rung Myeloma UK helpline 0800 980 3332 Mon -Fri they are all knowledgeable on MGUS and Myeloma that is their focus and they do a lot of research.
.I have an MGUS diary so I keep a track like you and it keeps it all in one place .
Last test I had my HB was lowest so im waiting for next check in 2 weeks,trying to distract myself.I have IgG Kappa.I think the "rd"in your result indicates low immunity but as @TanyaBloodCancerUK suggests ask your Team,plus I could be wrong :thinking:
I would encourage you though to call the Myeloma helpline as well,the Nurses are very helpful and understanding .

Good to hear how you are getting on and take care best you can in the meantime :+1:
Bannanacake

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Hi @Kevin1, isn’t it interesting back tracking, I see @TanyaBloodCancerUK has referred your post to the Blood Cancer UK nurses, your questions are far too technical for me and @Bannanacake have referred you to Myeloma Uk.
The main thing is you look after yourself and the anxiety, not knowing and waiting are the worst feelings.
Please let us know how you get on.

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Hi @Kevin1,
How are you doing today? As others have suggested already, discussing this with you rheumatologist is a really good idea as IgG subclasses can be very complex & often means differnet things for different people.

It is good to know that your team have requested input from immunology as they truly will be the experts in this area.
In case it is useful in any way this webpage somewhat breaks down the language and explains subclasses a little more- IgG Subclass Deficiency | Immune Deficiency Foundation.

Do Take Care, Lauran

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Morning all,
Many thanks for all that replied to my post dilemma,received a Doctors text message (yep a simple text to keep on “watch wait”) Basically those above test’s I mentioned was abnormal as expected.
Serum electrophoresis paraprotein presence
IGG lambda
Low red blood cells again low .
So Blood test Again March 2023 or if anything changes go before.
I have MRI thoracic Cervical etc results age related (57) osteoporosis spine ,no lesions.
But 10 months on still lower back bone pain and hips nothing as gone away.
I know I know Off course trust your Drs etc ,but I can’t help worrying about getting left in the System,and things get worse,when MGUS SM MM Could have been seen.
Personally I think my MGUS has gone too next level.
Can just slight Blood tests abnormalities become next level MM?
Can people have normal Bloods but yet have MM?
Thanks again Kev.

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Oh @Kevin1 I can tell how anxious you are but I am useless with medical questions, you really need a medical person to address your questions.
Perhaps you might request a face-to-face appointment with another doctor and be prepared with your list of results, symptoms and their severity and questions you want to ask.
Please let us know how you get on and take care of yourself

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Hello @Kevin1
Just wanted to step in and answer your question as far as I can.
Slight blood test abnormalities do not usually indicate Multiple Myeloma, here is the MGUS fact sheet from Myeloma UK which does guide you to what to look out for in regards to your blood tests. Your GP should have guidance regarding when to escalate any issues with the blood counts as the arise. There is a MGUS diary that may also be of use to you from our colleagues at Myeloma UK.
Multiple Myeloma is diagnosed often due to abnormal blood counts but they are specific blood tests, like the tests you are having taken at the moment. MRI scans, urine and symptoms are also part of the diagnositic process.
I do hope this helps and I would alse recommend talking to Myeloma UK or you can call us too: Blood cancer information and support by phone and email | Blood Cancer UK
Take care
Gemma

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Thanks for your reply,if I get overwhelmed with red tape I be back (no reference to the film) .Kev

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Good morning all
Like to say been busy,busy as in worrying over things yes.
I truly awful at Techno stuff this is only way I can see to reply back.
Wanted to reply to a post from Agnes who posted recently,bizarrely I just needed to put my name on her post regarding MGUS diagnosis in March this yr.
As said before suffering lower back pain and neck pain ribs,went Mri scan for possible Large Sarcoma on back had for yrs,was starting be painful,now its Lipoma 5cm waiting surgery for removal.
So months after MGUS diagnosis I know type
IGG lambda
At lower end result’s 5 now 6g/l
Paraprotein found
Kappa lights chain abnormal
Dreaded wotch wait
Blood tests due jan 2023
However bone pain lower back rib’s ongoing
MRI no lesions
Slight osteoporosis spine areas
C5/c6 nerve impingement
So update for now sorry was long
Regards Kev

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Hi @Kevin1 lets try for you @agnes let’s see if that works for you @Kevin1
What about looking at watch and wait as active monitoring, it helps me.
I have osteoporosis as well (and a curvature of the spine) and I have fractured and compressed all my L vertebrae and a T one in the last 10 yrs. I was 5ft 5in I am lucky to be 5ft now and nerve impingement. My ribs are near my hips now!!!
Thanks for your update.
Look after yourself and please keep posting

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