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Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I’ve had mgus IgG kappa for 17 years.

A MyMyelomaTeam Member asked a question 💭
Kent uk

For all this time Ive had freezing legs, variable walking now just poor, PEs x2, shutdowns where my bo goes 35/25 then 280/270 within a minute and I can’t move or talk for hours tho conscious
Now proven small fibre periph neuropathy with mild axonal damage, low egfr, blood +++ and protein in urine, and for five years Hemi facial spasm, now with same side tmj stiffness pain and grating
I have constant pain stiffness and fatigue.
My heam still says it’s mgus, new renal says might be mgrs, and… read more

October 3
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Reactions
A MyMyelomaTeam Member

Lizanne,
I don’t think AI recognizes a second question on the same page. Try going to Q & A and asking again. I’m sorry you are not getting the help you need.
Paula🌹

6 days ago
A MyMyelomaTeam Member

I have seen over 250 different consultants and never had a care pathway. I asked pals to support getting the cryo test done properly at guys, as it was not done at kings a year ago. It was still not handled correctly and is again neg; falsely I believe.
Pals turned it into a ck
Plant j said didn’t want to, and now I have a five page letter from the bird exec of guys, and I’m sure my renal co sultans in who. I have great trust now is fed up with me.
I think MGCS can be caused purely by paraprotein or flc invasion of organs; I asked for these to be tested on my sural nerve biopsy( as directed by amyloid prof at royal free) but they were not. How can MGCS be tested?

October 3
MyMyelomaTeam

What a frustrating and exhausting journey — 17 years of complex, escalating symptoms and feeling like you're the only one connecting the dots. That takes real resilience, and your instinct to push for coordinated care is absolutely right.

Yes, you can absolutely request a Multi-Disciplinary Team (MDT) meeting. Here's how to Show Full Answer

What a frustrating and exhausting journey — 17 years of complex, escalating symptoms and feeling like you're the only one connecting the dots. That takes real resilience, and your instinct to push for coordinated care is absolutely right.

Yes, you can absolutely request a Multi-Disciplinary Team (MDT) meeting. Here's how to approach it: Through the NHS:
- Write a formal letter to your haematologist (as the lead specialist) explicitly requesting an MDT review, listing all your specialists and symptoms
- Ask your GP to champion this request — GPs can formally refer and coordinate between departments
- Contact the Patient Advice and Liaison Service (PALS) at your hospital — they exist specifically to help patients navigate situations like this
- Ask for a "complex case review" — this language often carries more weight than simply requesting a meeting

Privately:
- Seek a private haematologist who specialises in plasma cell disorders and MGUS-related systemic conditions — they can often facilitate cross-specialty communication more quickly
- A specialist centre like the Royal Free Hospital or University College London Hospital has dedicated myeloma and plasma cell disorder teams experienced with complex MGUS presentations When making your case, document everything:
- A clear timeline of all symptoms over 17 years
- All test results, diagnoses, and specialist opinions
- Your own hypothesis (MGCS with possible cryoglobulinaemia) written clearly — specialists respond well to informed, organised patients

The renal team mentioning MGRS (Monoclonal Gammopathy of Renal Significance) is actually a significant development — that terminology acknowledges monoclonal proteins causing organ damage, which supports the broader picture you're describing. You are not wrong to push for this. The complexity and duration of your symptoms absolutely warrants coordinated specialist review. Don't give up — being your own advocate here could genuinely change your care pathway.

October 3

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