[ricejon]

Jon, 48, recently diagnosed with MGUS

by ricejon on Thu Dec 22, 2016 3:41 pm

Hello Friends,

Over the summer I was diagnosed with MGUS. Like so many of the people who visit the Beacon, I was initially surprised and totally confused. I am doing my best to cope with this and educate myself as I try to figure out how this might affect my future. I have a hard time not thinking about my diagnosis and health non stop. I've been researching "Dr Google" and exploring the Beacon incessantly for months.

Like many others, I was told that MGUS usually shows no symptoms, but I have been dealing with peripheral neuropathy for a while now. My neurologist is skeptical that it is related to MGUS, but I am beginning to think that it is. I have experienced weakness in my right leg, tingling, weakness, (and atrophy) in my calves, and muscle twitches all over. I also have experienced back discomfort for the past 10 years.

It's difficult to say what aches and pains could be caused by MGUS, peripheral neuropathy, and what is related to arthritic changes, stenosis, or degenerative disc disease. I also wonder with every ache and pain, "maybe it's just a sign of getting older". I have had multiple MRI's that indicate the spinal issues, but I have been told that I am not "surgical".

I am 48 years old. I have been stretching, doing core and other strength training exercises religiously since May. I have gained strength in many areas and I love to exercise. I also do a 6.5 mile "walk jog" one or two times per week. I am an active high school PE teacher, husband, and father of three boys. I'm hoping and praying I have a long future to share with them.

My biggest concern now is that I have been told to be aware of any bone pain. I've been feeling aches in my back for years so now, I'm not sure if what I feel is bone pain or something less consequential. I can't tell the difference between what could be bone pain, neuropathy, or "arthritic changes".

Here are some of my notes from my recent blood work up:

IgG Kappa Monoclonal Band Present

M-spike 1.6 g/dl (up from 1.5 over the summer)

Immunofixation Serum

IgG 2019 mg/dL range 694-1618 (up from 1983)
IgA 36 mg/dL range 81-463 (up from 34)
IgM 91 mg/dL range 48-271

Calcium 9.5 (up from 9.3)

Kappa Light Chain Free Serum 28 (range 3.3 - 19.4 mg/L)
Lamda Light Chain Free Serum 10 (range 5.7-26.3 mg/L)
Ratio 2.8 (range .26 - 1.65)

Total Protein 7.4 (range 6.1-8.1 g/dL)

I am currently taking supplements: alpha lipoic acid, acetyl L carnitine, B complex, magnesium, coQ10, vitamin D, turmeric, and fish oil

Thank you to all who may read this. I appreciate any advice or support that you may be kind enough to offer. I feel alone in all of this because most people don't even know what MGUS is and don't realize the stress that I am living with these days.

I am sleeping and eating much better than I did over the summer. I was massively depressed over the summer and am in a better spot now (anti depressant is helping, I'm sure). My energy is also very good. I'm just stressed and worried virtually non stop.

Thank you all for your support and Merry Christmas and Best Wishes for a happy, healthy 2017 to all of you.

Sincerely,

Jon

[MapleTree]

Re: Jon, 48, recently diagnosed with MGUS

by MapleTree on Thu Dec 22, 2016 9:47 pm

Hello Jon,

I'm sorry to hear you have joined the MGUS club. It can be a stressful place. The first year I went through a huge amount of stress. My hematologist didn't do a good job of explaining things and always seemed to be a huge rush. Fortunately a change in insurance forced me to find a new hematologist, and luck of the draw I have an amazing one now. I went to see her a couple weeks ago and she spent close to an hour with me talking, drawing diagrams, and going over my bone marrow biopsy from the previous hematologist. She also gave me the percentage of possible transition to multiple myeloma given all of my numbers and the results of my biopsy. I felt a big relief after being with a doctor that explains things and doesn't let me leave the office full of stress and uncertainty.

I'm not sure how well your doctor is doing at explaining any of this to you, but I urge you to find a doctor that will talk you through everything about MGUS and myeloma as well as other possible things that could be going on with you (if your current doctor isn't doing that). You also need a doctor that can help you sort through supplements, not a doctor that shrugs and gives you some canned response. Supplements are medicine.

As for the neuropathy and bone aches, there are many here who say they have these things happening to them and they believe it is the MGUS. Has your doctor discussed a bone marrow biopsy and skeletal x-ray with you?

I spent a lot of time being stressed and afraid. I lost a lot of weight in the process and it didn't help my health at all. While the internet can be a great source of information and Myeloma Beacon is a great place, it doesn't replace having a doctor that can really sit down and discuss everything with you in depth. Your doctor should tell you the plan for future testing so you know what to expect. Many doctors say to come in every 3 or 6 months with no explanation beyond that. My doctor explained I will come in every 3 months until she is able to have a good understanding of how my numbers fluctuate. After that, she will determine if I need to continue every 3 months or if I can moved to every 6 months or once a year.

I was really in the dark until I got my current doctor. Now I feel I can enjoy my life again.

You really do need a doctor that can help you get to the bottom of your symptoms too because if you are experiencing pain, that effects your quality of life.

I hope this helps. Others on this board will chime in too.

Have a good holiday and be well.

[cdnirene]

Re: Jon, 48, recently diagnosed with MGUS

by cdnirene on Fri Dec 23, 2016 1:17 am

Hi, Jon.

I was never diagnosed with MGUS, but I was diagnosed with multiple myeloma two years ago after suffering kidney failure. In the months leading up to my diagnosis, I never experienced any of the symptoms you described.

I did have arthritis in my lower back, but I had experienced that for over 10 years, and it would disappear for months at a time (my Mom said that was normal for arthritis), and sometimes I aggravated it by not having proper lower back support when I was sitting for long periods.

Living with uncertainty is a challenge I wish I had some wise words about that, but unfortunately I don't. I don't make long term plans any more.

[ricejon]

Re: Jon, 48, recently diagnosed with MGUS

by ricejon on Fri Dec 23, 2016 8:49 am

Hello Friends,

Thank you so much for the replies that I've received and to The Beacon for providing this valuable resource!

I did have a skeletal x ray over the summer and have checked out ok with the CRAB criteria. I am going to consider seeing another hematologist.