Positive proteins neuro bloods

[Hgsn]

Had a call from my neurologist yesterday who stated one of my blood tests she sent, specialised to neuro didn't catch the name, has come back with raised proteins. She is sending me a letter with full details as I kind of lost focus as she mentioned she wants me to have a full body ct as this result can sometimes indicate cancer somewhere in the body 😣. Slightly freaking out today, yesterday I was more calm about it. I've done the thing I shouldn't and googled and it seems to be known as an 'm spike' of the proteins. It can cause simular symptoms as b12 deficiency in terms of pain in bones and muscles along with weakness and peripheral neuropathy. Has anyone experienced this?

[Sleepybunny]

Hi Hgsn,

Gentle online hugs to you.

I haven't experienced what you describe but just wanted to let you know I'm thinking of you.

I'm glad the doctor is being proactive and arranging a scan.

[Hgsn in reply to Sleepybunny]

Thank you, this means alot

[Myoldcat]

Hi Hgsn, I think she is referring to a condition called MGUS, where bone marrow produces those higher levels of proteins. I was diagnosed with it last year after my gp tested me for it 'on a hunch'. He described it as a 'hypothetical diagnosis', as the vast majority of people have no symptoms and the condition remains stable throughout their lives. In fact, many people will have it without ever knowing, as they will never have any issues to trigger testing. It does seem to occur a little more frequently in those of us with PA. Like you I was freaked out, but because my diagnosis was at gp level I've only been offered annual blood testing to monitor things. So your neurologist is acting promptly by ordering the ct scan, as that will give you a baseline against any future tests. I hope you get the scan quickly, and it reassures you.

[Hgsn in reply to Myoldcat]

Thank you for this. I'm hoping this is the case and I just continue to be monitored. When looking at the symptoms I have been getting hip and back pain again, but these did resolve when first having b12 injections, so I feel these are more linked to the deficiency and the fact I need more treatment. The only other positive is that I know in October 2023 it was negative, as I had the same test done then and to my understanding like you said, people can walk around for years with the proteins and never know and wouldn't necessarily progress to cancer in a short space of time. I tested "negative" for PA but I do understand that the test isn't always reliable. My gp said I was " never anemic" but on reviewing my bloods from when I first discovered my b12 deficiency my hct was very slightly low. I don't have any other risk factors for b12 deficiency so I know its absorbtion.

Does mgus affect you in anyway in your experience?

[Myoldcat]

Well I don't think it affects me, but now I have 2 weird conditions that gps don't understand, so it's hard to tell! Initially any new aches really worried me, as it was hard to separate some of my B12 symptoms like shin nerve pain from MGUS bone pain, but my protein levels are low and have been stable, so logically it's B12 not MGUS. However, I am supporting my bones with quite high levels of Vitamin D (often poorly absorbed with PA) K2, and magnesium.

I've just signed up for an MGUS research study that's being run at several hospitals - it's observational, to help improve knowledge and understanding of the psychological impact of diagnosis, and progression. For me it should also mean better monitoring than via my gp surgery. If you’re interested, do message me for details.

[Hgsn in reply to Myoldcat]

I think that's what is on my mind because I have the bone pains returning, now 8 weeks post loading doses, but these did ease with injections so now I'm thinking is it something worse than my b12 causing the symptoms 😣. She didn't give me a level she just said it was 'positive'. I have an mri of my spine and head on Monday, that was pre planned anyway due to my symptoms with my b12, she wanted to get a better picture of any damage that may have been caused by this. My neurologist is more motivated to get to the bottom of why my b12 has gone so low, my gp isn't interested. Yes I'd be interested in this if it turns out MGUS 😊.

[Nackapan in reply to Hgsn]

Your neurologist is being thorough . ✔ My daughter from the age of 18 had many many investigations.

Brain

Body

Spinal MRIs

Lumbar puncture

Tests for Addisons

Heart monitoring

48hr urine collectiins

Tests for cauda equine

MGUS also mentioned then dismissed

Lupus

Shed had many blood anonomies that seemed to come to nothing

Under rheumatology

Gastroenterology neurology,cardiology .

Big teaching hospital banding her around

Sent to pain management for body pain

Labelled with fibromyalgia

Anxiety

Depression......all incorrect

Many many other

Took a general medical consult to start pulling it all together in A + E !

Anything 'interesting / different sparks interest in an inquiring medics mind.

Each specialist discharges abruptly if 'nothing seen of consequence '

Symptoms remain but no answers .

Try and stay as calm as possible before scan results.

Easier said than done.

It's good you are being checked out .

Good to rule things out too.

Sometimes no answers 😕

[Hgsn in reply to Nackapan]

Your daughter has had it Rough🥴. Thank you for taking the time to comment, I've decided to try and keep my mind busy and 🤞🏼 everything is good.

[Clugster in reply to Nackapan]

Sounds like me when I was her age. Took nearly 4-5 years to diagnose b12 with pernicious Anaemia. I’m now 51

[Myoldcat]

You can't help worrying, especially when symptoms fluctuate so much. You are being well looked after by the neurologist. Message me if you get an official MGUS diagnosis- from one cat to another! 😄