[bmwm3]

Worried I may have MGUS or multiple myeloma

by bmwm3 on Mon Jul 11, 2016 10:40 pm

Hello everybody,

My name is Chris and I am a 37 years old. I am not entirely sure if I belong here as I have not been diagnosed with anything as of yet, but I have had read some of the discussions and seems it might be beneficial and educational on my symptoms and wanted to get your opinions? You all seem to be lightyears ahead of my knowledge, but I am picking up new information as time goes on.

So, I have been having constant abdominal pain and constant stomach issues that have been going one for approx. 2 years. The pain is always present and does not go away. To make a long story short, my bowel habits have changed and I have been eating much less, not requiring a lot to feel full. Been to the GP many times along with GI doc and had every test and imaging study completed and all seemed normal. I kept coming back to my GP complaining of the same issue, diminished appetite, constant abdominal pain, etc. Additional CT scans, ultrasounds were ordered and came back normal.

They decided to run blood work and this time showed elevated total protein at 8.4 and and calcium at 10.3 whereas about 6 months ago they were at total protein 7.7 and calcium 10.1. I'm not one to worry much, but she did mentioned it was a little unusual and wanted to run the labs again in a few weeks. She wanted to rule out any other "possible causes." I asked if she could explain, and she explained worse case is something called multiple myeloma or MGUS and some other things, but didn't want to freak me out and said it's only as a precaution.

As most do, I decided to research it online and found the symptoms to be very similar to what I have been dealing with; I have never really put everything together until now.

My other symptoms are the following:

1. Widespread body pain that sometimes prevents me from doing anything. I have a blown disc in my back and a clavicle fracture that required surgical fixation to repair. It has been well managed with minimal pain and all of a sudden (within the last 6 months) my back pain and shoulder started to hurt much more. Went to see a neurologist / pain clinic to try to figure it out and they said it could be scar tissue and my body is in overdrive to compensate for that and inflammation. I have been getting continued treatment not really knowing what caused the pain to escalate so badly. I have not had an x-ray of my back or clavicle in years, but have had recent MRIs which showed no real change from before. I also have been waking up with severe neck pain and always associated it bad sleep pattern.

2. Severe constipation - I never had issues here before and the GI doc seems a bit lost on the cause

3. Weakness - Feels like my hand and legs have this 'tickling" sensation that's hard to describe, I but I find it hard sometimes to hold something or reach for the radio in the car to press a button, and my hand sometimes shakes involuntarily.

4. Confusion - I am an software engineer and considered brain fog is normal of being an engineer. However within the last few months, I have had memory loss and confusion so bad to where my work colleagues have asked if I was ok. I normally don't get confused often and pointed at just not getting enough rest or stress.

5. Sudden "more" severe back pain - I have built a good tolerance for chronic pain, but now its getting hard to function at this point and along with the neck pain.

6. My face has been tingling and has been numb. Like pins and needles on both sides. Have not figured it out yet, but just took note of it.

I also have the following values from my labs:

Albumin - 5.0
Globulin 3.4
Albumin / Globulin ratio - 1.5
WBC - 7.9
RBC - 5.27

I am not sure what the next labs will consist of in two weeks, but happy to share more.

I do apologize for my long story and lacking knowledge at this point. I sometimes feel these groups are more beneficial and has more time to explain things. Maybe this means something and throws a flag or maybe it does not, but I appreciate the time you all have took to read this and offer any advice if this is something I should be more concerned about.

Chris

[Multibilly]

Re: Worried I may have MGUS or multiple myeloma

by Multibilly on Tue Jul 12, 2016 6:30 am

Hi Chris,

Welcome to the forum.

It's not clear to me that you may have MGUS, multiple myeloma or a related monoclonal gammopathy. How­ever, an elevated protein level and high calcium level would warrant some additional follow up tests to rule out a monoclonal gammopathy. How are your hemoglobin, eGFR, and creatinine levels doing?

First off, I'm not a doc, so please verify all this with your doc. Many of your symptoms could be explained by hypercalcemia associated with a monoclonal gammopathy, but your calcium level doesn't strike me as being that high (but it depends on what the reference values are for your particular lab results). Amyloidosis would also be something you might want to rule out.

The typical front-line lab tests you should ask your doctor to run are:

Serum protein electrophoresis
Serum immunofixation
Quantified immunoglobulins (IgG, IgA and IgM)
Serum free light chain
CBC and metabolic panel
Possibly a 24 hour urine protein electrophoresis

I would also keep the amyloidosis possibility in mind as you go through the testing (one or more of the above tests would likely be "off" if you had amyloidosis ... but you would need further specialized testing to confirm it's presence).

Lastly, note that, when you share lab results here, it's always helpful if you also include units of measure along with the standard reference ranges for each result.

Let us know how things go and good luck.

[Chris in NJ]

Re: Worried I may have MGUS or multiple myeloma

by Chris in NJ on Wed Jul 13, 2016 10:12 am

Hi, Chris.

I'm not sure about your personal living situation (if this is even a possibility), but if the testing for myeloma is inconclusive, is there any chance you have chronic exposure to carbon monoxide?

Even low levels of CO poisoning, if over a long period of time such as a couple of years, can impact your body and your brain in ways doctors are just starting to understand. My situation was cracks in a chimney flue over a period of 8 years, with low (inconsistent) levels of exposure, which has led to increased migraines, some gut issues, insomnia, some numbness and tingling in different parts of my body (notably once in my jaw), and definite memory problems.

Best, (Another) Chris

[bmwm3]

Re: Worried I may have MGUS or multiple myeloma

by bmwm3 on Wed Jul 13, 2016 3:25 pm

Thank you for the welcome Multibilly, I highly appreciate the additional things you mentioned. I'll make sure to reach out to my doctor and discuss it and take notes. She may already be on to the additional labs, but i'll double check. I just also came across amyloidosis as another possibility.

Units of measure, you have an excellent point I attached a screenshots of my labs ran. I'll provide more updates as soon as I can and thanks again.

IMG_1681v2.jpg (89.96 KiB) Viewed 1289 times

IMG_1695v2.jpg (69.23 KiB) Viewed 1289 times

[bmwm3]

Re: Worried I may have MGUS or multiple myeloma

by bmwm3 on Wed Jul 13, 2016 4:29 pm

Hi Chris in NJ,

Thanks for the information about possible CO exposure. That is very interesting and I would have to investigate it a bit more. I don't believe I've been exposed to any unnecessary amounts of CO, and we have CO detectors in the house, but that is what I like about these forums so much, as that could be a gap I overlooked. I appreciate the info and will keep you posted in the coming weeks.

Also another Chris

[Multibilly]

Re: Worried I may have MGUS or multiple myeloma

by Multibilly on Wed Jul 13, 2016 8:22 pm

Other than the elevated protein level, nothing jumps out at me on these additional test results that scream monoclonal gammopathy. But it's good that your doc is acting on the elevated protein level finding. Good luck and let us know what happens with your next round of testing.

[bmwm3]

Re: Worried I may have MGUS or multiple myeloma

by bmwm3 on Thu Jul 14, 2016 11:20 am

Thanks again for all the info you guys. I'll try not to worry, with that said, and clog up this thread until my next set of labs. I will be reading other threads to educate myself and get a better under­standing.

Kind Regards,

Chris