[Jayphillyeagles]

44 years old and diagnosed with MGUS

by Jayphillyeagles on Wed Apr 17, 2019 4:27 pm

Hi,

My name is Jay and I'm 44 years old. I was heavily into bodybuilding. I was training 5 days a week and probably ovetrained and only slept about 5 hours a day. I'm recently diagnosed with MGUS at my VA.

In December I felt so tired I had to go to the emergency for IV. I was doing the keto diet so I thought this was the cause. In January my workouts energy was low. In February, I had a real bad right arm ache that went through my triceps, elbow, forearms, and hand. They sent me to specialists and found no break or nerve damage. I'm still getting physical therapy for the arm. However, in my spine, an x-ray recommended spine decompress. I had an herniated disc for over 10 years from the military and weight training. Also, in February I was sent to a renal doctor because high protein and creatine levels was in my urine. Utimately, my renal doctor sent me to hematology.

My blood was tested and I had an M-spike of 0.26 in kappa region. My free light chain ratio was 1.98. My kappas were 24 and my gamma was around 12.5. My serum calcium was 9.7. My iron is fine. Last week I had an skeletal scan and the report said the images was grossly normal and no multiple myeloma was found.

I have mild tingling in my fingers and toes once in a while. However, my wrist and arms thump sometimes. Both my arm hurt. I'm not sure if I'm recovering from weight lighting because I was doing hammer curls with 40-60 pounds on each arm, while squeezing muscle for maximum tearing up muscle and creating creatine. I tore up a lot of fiber for about 7 months non stop.

I don't know what to think. Talking to the doctors they think I'm ok, but they are considering treatment for stopping the protein going to my kidneys. I was a little scared initially because 6 years ago my brother passed of multiple myeloma. He was exactly my age. We have the same mother but different fathers.

Thank you for your time and have a great day.

[TerryH]

Re: 44 years old and diagnosed with MGUS

by TerryH on Wed Apr 17, 2019 6:24 pm

Welcome to the forum, Jay.

MGUS is not normally treated. In fact, a diagnosis of MGUS almost by definition means the person with the disorder should not receive treatment.

If your doctors are considering treating your monoclonal gammopathy, to me this would mean that they are considering the possibility that you have something more than just MGUS.

There is a continuum of sorts going from MGUS to smoldering multiple myeloma to multiple myeloma. All three of these disorders are related, but as you go from the first (MGUS) to the third (multiple myeloma), the impact of the disease on the body becomes more significant. It is only multiple myeloma that is typically treated.

Fortunately, there are very clear criteria for what is MGUS, what is smoldering multiple myeloma, and what is multiple myeloma. It's not really a "I think you have X" type of situation."

The criteria differentiating between MGUS, smoldering myeloma, and multiple myeloma are summarized here,

https://myelomabeacon.org/forum/criteria-for-multiple-myeloma-diagnosis-t8505.html

and in the other posts and article mentioned in the above post.

If your doctors do not seem aware of these criteria, or if they do not seem to be following them, then you may want to consider seeing a myeloma specialist, which is a hematologist-oncologist who sees almost only myeloma patients, and who generally also does research related to multiple myeloma.

If you are in the Philadelphia area (as your user name suggests), then Penn has a number of myeloma specialists. If you are somewhere else in the U.S., you can find a list of cancer centers with myeloma specialists here:

https://myelomabeacon.org/treatment-centers/

I don't know enough about how the VA handles referrals, but if the doctors there seem uncertain of your diagnosis, I would think they would consider referring you to an outside specialist.

Good luck, and keep us posted on what you find out.

[Jayphillyeagles]

Re: 44 years old and diagnosed with MGUS

by Jayphillyeagles on Thu Apr 18, 2019 6:44 am

Thanks, Terry, for the concern and detailed post. Yes, the doctors are telling me MGUS, but they are concerned about the protein leakage in my urine. They want my renal doctor to consider a biopsy of my kidney, which they say can determine the source of the protein and what type of protein exists.

I'm becomong proactive about my health and situation. I have highs and lows in my spirit since knowing about these diseases. I am normally an upbeat person, but I feel myself sad a lot. I see myself pushing people away from me and staying to myself. That is why I came to this site, because I figured you all would understand what I am going thought right now.

[Multibilly]

Re: 44 years old and diagnosed with MGUS

by Multibilly on Thu Apr 18, 2019 10:03 pm

Hi Jay,

Welcome to the forum.

Did the doctors ask you to perform a 24-hour collection of your urine and run a urine electro­phoresis test on the urine sample? That test would tell you if any of your monoclonal free light chains found in your blood are spilling over into your urine. The mono­clonal free light chain proteins found in one's urine are also known as Bence Jones proteins. A quick "dipstick" urine test that one often gets in a GP's office is not able to check for the presence of Bence Jones proteins.

A renal biopsy is usually performed to look for any kidney damage that your excess monoclonal free light chains may be causing. It would also be potentially used to look for the presence and damage from another type of protein known as amyloid protein (a condition known as amyloidosis). But, unless a doctor suspects kidney damage or is unable to confirm a suspicion of amyloidosis by less invasive methods such as a tummy fat pad biopsy, then I wouldn't think that a doctor would necessarily jump to performing an expensive and somewhat involved renal biopsy. But then again, I'm not a doctor and I could be wrong on this point.

In any case, I would encourage you to take Terry's advice and consider whether you should see a myeloma specialist as your next step.

[Jayphillyeagles]

Re: 44 years old and diagnosed with MGUS

by Jayphillyeagles on Sun Apr 21, 2019 2:39 am

Hi Multibilly,

Thanks for your response. My renal doctor is looking into the kidney biopsy. He wants to use that to determine what is going on. Protein is affecting my kidneys, but they aren't damaged alot. My M-spike in December was 0.26. But last week my kappa lambda ratio was 1.92. my skeletal scan shows no lesions. I do have body aches, but they may be due to over training body builder straight for months. Nevertheless, the renal doctor wants to see what type of protein is going to my kidneys and determine the protein leakage or if it was due to protein shakes. If it's protein shakes, he will work to keep my blood pressure down, and if it's from anything else, they want to do treatment and kill it while my numbers are so low. They think they can bring my M-spike of 0.26 to zero easily to save my kidneys from future damage.

[Multibilly]

Re: 44 years old and diagnosed with MGUS

by Multibilly on Sun Apr 21, 2019 1:31 pm

Hi again Jay,

Note that if your M-spike is 0.26 g/dL (I am assuming units of "g/dL"), then this is a pretty small M-spike.

The monoclonal proteins measured in a serum M-spike are "heavy chains" and these heavy chains don't typically impact one's kidneys so much (although they may with certain patients). However, the overabundance of monoclonal free light-chains, or elevated serum calcium levels (hyper­cal­cemia) associated with myeloma can more typically cause kidney damage, and this is what doctors tend to worry about most when it comes to potential renal damage from myeloma.

While you didn't share your specific free light chain values, a free light-chain ratio of 1.96 isn't too far off from normal, so I suspect that your individual free light chain numbers are within or close to normal values. One begins to worry when this free light-chain ratio starts to approach 100.

While I am not a doctor, I doubt that a myeloma specialist would consider treatment to "bring down" any of your numbers based on what you've shared thus far.

[Jayphillyeagles]

Re: 44 years old and diagnosed with MGUS

by Jayphillyeagles on Wed Apr 24, 2019 2:03 pm

Multibilly,

Thanks for your knowledge. You may not be a doctor, but you are talking like one. The hematologist-oncologist doctors agree, my numbers are very low. Matter of fact, in March my ratio was 1.98, and in April it was 1.90. It lowered with no treatment. All I did was rest and got off my keto diet. However, my renal doctor wants to do the kidney biopsy to know for sure what is attacking my kidneys. My kidneys are good but decreased from being excellent within two years. He feels that it is better to stop the problem in it's track.

Even through I'm at the VA hospital of Philadelphia, the doctors are from the University of Penn­sylvania. The doctors believe I am young enough and strong enough to endure the myeloma treat­ment to prevent renal failure down the line. In addition, the doctors believe a quick treatment can get my ratio, protein, etc to zero. My brother died of multiple myeloma 6 years ago and they are taking this into consideration.

P.S. - It's my impression that excessive protein shakes can damage your kidneys. A lot of body­builders are getting bad kidneys and other ailments from supplements. I personally believe that the protein shake companies are protein spiking and adding stuff that is not protein and messes up your body.

[Dimamar]

Re: 44 years old and diagnosed with MGUS

by Dimamar on Wed Apr 24, 2019 9:51 pm

Jay,

Your M-protein is barely there, and the free light chain numbers are close to normal.

And serum calcium is normal.

My understanding is that to get myeloma-related kidney issues, you'd have to have M-protein leaking into urine, but with such a low serum number, I do not see it as being likely at all.

I understand about your brother , very sad, but I do not believe myeloma has been found to be genetic? Do you recall what your brother's numbers were?

I want to say that body building has to do with kidneys.You should check what your creatinine level is in your blood.

Before doing some serious biopsies, perhaps do a 24-hour urine test that also measures if there is Bence Jones protein in the urine, as Multibilly suggested? (And Multibilly is indeed the man! ) 24-hour urine is the only reliable way to measure proteins in urine.

Best of luck, stay positive!