[lupinelady]

MGUS, neuropathy, and avascular necrosis

by lupinelady on Fri Jun 20, 2014 1:52 am

Hi Everyone,

I'm 26 years old with MGUS. My M-spike is low at 0.06 (as of May 2014), and my free light chain ratio is normal (as of August 2013). I am beginning to have difficulty walking (especially when turning around corners), with severe muscle weakness and gait ataxia. My neurologist things it might be MGUS neuropathy.

Additionally, I have avascular necrosis in both knees. I got the MRIs today, and it does not look good. I also have lupus, so AVN can be attributed to high dose (60mg) steroids for over a year, chemotherapy for over a year (to control the lupus), and the disease itself can also cause AVN (honestly it's most likely one of those things), but there are some weird looking patches on the bone that extend below the joint itself and there are black holes in parts of the bone (I don't really know what AVN looks like on an MRI so maybe that's all normal!).

My blood calcium levels are slightly elevated, my renal function is fine, I'm on iron supple­ments for restless leg syndrome, so I'm not sure if that affects blood tests for anemia. I'm getting cold sores (never had them in my life), and I have no appetite, vomiting many times daily, lost 10 pounds in two weeks - but no sign of infection.

I have an appointment with hem/onc next Friday. I was supposed to see him yesterday, but as soon as I got to his office, I had several seizures (been having them for weeks now) and they don't know why. An MRI of my brain shows no changes (in the past, I have had a grand mal seizure resulting in a coma from brain inflammation due to lupus, so they have many MRIs to compare this one to). My neuro is doing an EEG tomorrow and an EMG on Monday to try and determine the cause of the muscle weakness and gait ataxia.

Does any of this sound like it would be from MGUS? I'm desperately looking for answers and no doctor seems to have any

Attached is an image with the weird holes from one of my MRIs...I have a ton of images, so I don't know which is the best to show what I'm talking about. It might just be AVN though!

Thanks for any info!
Chelsea

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[Ian]

Re: MGUS, neuropathy, and avascular necrosis

by Ian on Fri Jun 20, 2014 6:30 am

Sorry to hear about all the problems you've been having, lupinelady.

I was wondering if you could clarify a few things related to your question.

First, you mentioned in your original questions related to what you've been experiencing, posted over here,

https://myelomabeacon.org/forum/possibility-of-mgus-at-26-yrs-old-t3335.html

that you had not yet been diagnosed with MGUS, but were wondering if perhaps you had MGUS. Have you been diagnosed between then and now and, if so, what was the basis for the diagnosis?

Also, you mention that your free light chain ratio was normal. Was the free light chain test a serum or urine free light chain test? Also, what were the individual (kappa and lambda) free light chain levels?

Finally, what exactly are your calcium levels? Have they just recently become elevated, or have they been elevated for a while?

[lupinelady]

Re: MGUS, neuropathy, and avascular necrosis

by lupinelady on Fri Jun 20, 2014 1:14 pm

Hi Ian,

I told my doctors all of the blood work results, and they don't say, "oh you need to be evaluated for MGUS", they keep saying that I just have it. So I guess I'm a little unclear about that too, but they're not viewing it as a question mark, they're viewing it as a fact. So yes and no? I'm a little confused about why they're proceeding with testing and theories based on what I thought was an unconfirmed diagnosis, so that's what happened there.

As for the calcium levels, they're normal then high then normal, and "high" is just barely above normal at 10.5 mg/dL. My rheum freaked about it (but she tends to freak about a lot of silly things like barely elevated liver enzymes). So I'm not terribly concerned about that.

A serum IFE revealed low IgG and IgM (15, 517), but I'm not sure if the free light chains were serum vs. urine. The test result is labeled "Free K+L Lt Chains,Qn,SL" if that helps? I don't see a general urinalysis for that day, and don't remember whether or not they took a urine sample, as it was about a year ago they did this testing. The immunofixation result summary said, "Serum IFE reveals the presence of monoclonal free lambda light chains. Suggest urine IFE for Bence Jones Protein" They never did the recommended test though.

My free lambda light chains were 2.85 mg/L and my free kappa light chains were 1.49 mg/L, with a ratio of .52.

I really like the hem/onc specialist I'm going to next Friday. He evaluated me for an enlarged thymus/suspected tumor (not found, thankfully!), in 2012. He's very good and a really nice guy. Hopefully it'll just be him following me with blood work for a bit, or he'll find nothing at all!

Thanks for the reply!
Chelsea