[Cissellia]

Have MGUS, and maybe something else?

by Cissellia on Fri Feb 05, 2016 7:28 pm

Hello,

With tears in my eyes I ask for your feedback and help, I am so sick. I know things can always be worse. I'm normally not so wimpy but I am new and need help. I've been sick on and off a few years. Kind of a puzzle for the doctors they have said, some saying it's chronic fatigue syndrome.

In October I got sick with another relapse/attack, whatever it is, and lost some of my peripheral vision. I couldn't seem to get over the attack, and since I had some vision loss, I saw a neurologist. The neurologist found the "M-spike," and I've now seen an oncologist who diagnosed MGUS about a week ago. However, he doesn't think my current symptoms are from the MGUS. It's IgA kappa if that helps. Anyone else with IgA kappa?

Severe ill feeling and nausea to the point that I can't function. My eyes are so incredibly red and dry, and I am losing weight fast! These things aren't like the various other attacks I have had.

In January, I had an outpatient surgery for another issue, and they did the bone marrow test then. Seems like I've just gone downhill fast since then.

I went back to my primary doc to share how sick I am. He wants me to go to the gastro doc and see if he can explain the nausea and weight loss. Then they found that I'm low in iron. Isn't anemia a bad sign? Or maybe low iron is different?

So now oncologist suggests venofer iron IV "so I don't become anemic". And I've been reading about side effects of IV iron! Anyone ever had iron infusion?

Sounds like most MGUS folks have no symptoms. I am praying that the oncologist is right that I am at MGUS stage at this point, but I am so sick, so sick.

I am a woman of faith and I am praying. It's not so easy for me to reach out, but I feel so ill, nauseous, sick and weak, and my eyes are so crazy red and dry. Not sure what is happening to me. My life feels upside down. It is scary. Maybe I have MGUS and something else?!

I am wondering if anyone can relate to any of this? Are those with MGUS sick like this sometimes or could it be the IgA type or are those with multiple myeloma sick like this?

Nice to find this forum. I appreciate any advice or experiences.

Thanks
Cissellia

[Mark Pouley]

Re: Have MGUS, and maybe something else?

by Mark Pouley on Sat Feb 06, 2016 2:39 am

Cissella,

So sorry to hear about the troubles you are having, and for so long. I don't have a specific answer about your conditions, but I wonder if you have a multiple myeloma specialist nearby that you can see. I don't want to alarm you, but I think you could get more definitive answers by seeing someone who deals with myeloma regularly.

When I was first alerted to my condition based on elevated protein in my blood tests (I'd experienced no other illness or symptoms), I was referred to a hematologist, who admitted that multiple myeloma was so rare he didn't often treat it. He initially thought MGUS and/or smoldering myeloma, but he referred me to a local specialist. More specific testing was done and the specialist recommended treatment.

I wasn't happy with the news, but I'm happy I know what is happening and I'm doing something about it.

Good luck.

[Multibilly]

Re: Have MGUS, and maybe something else?

by Multibilly on Sat Feb 06, 2016 11:38 am

Hi Cissella,

So sorry to hear about your situation. I agree with Mark that your #1 priority should be to seek out a top multiple myeloma specialist. If you let us know what city you are in, folks on this forum can recommend some specialists.

I'm not a doc. But when you described your symptoms and initial diagnosis, what came to my mind is that you may potentially also be dealing with amyloidosis. Amyloidosis could explain your vision and gastro problems. Amyloidosis is pretty easy to test for, but you want to be doing that testing under the guidance of a multiple myeloma specialist.

[Helen L]

Re: Have MGUS, and maybe something else?

by Helen L on Sat Feb 06, 2016 1:07 pm

Hi Cissellia,

I am so sorry to hear about your struggles.

I just wanted to encourage you regarding getting an iron infusion. My mother-in-law was feeling very nauseous, weak (she fell a few times), depressed, and fatigued. It turned out she required iron infusions every 3 months for a year and now twice a year. What a difference it has made! She is no longer tired or nauseous. There was no reason found for the low iron.

Having an infusion is somewhat boring because you will be sitting for a long period of time. Take a good book. Try to sleep. But I don't think you need to fear it.

Best wishes,

Helen

[Judedono]

Re: Have MGUS, and maybe something else?

by Judedono on Sat Feb 06, 2016 4:33 pm

Hi Cissella -

I'm so sorry to hear about what you're going through. I'm won­dering if they have done an auto­immune panel in you. I have IgM MGUS and I've also been diagnosed with Sjogren's (I have chronic, severe dry eyes). Just a thought.

Good luck!

Judy

[Cissellia]

Re: Have MGUS, and maybe something else?

by Cissellia on Mon Feb 08, 2016 12:16 am

Thank you all for your input.

I am in Dallas-Fort Worth, Texas. "DFW". Anyone know of a specialist here?

[Mark Pouley]

Re: Have MGUS, and maybe something else?

by Mark Pouley on Tue Feb 09, 2016 7:40 pm

Others may answer better, but my understanding is that M.D. Anderson in Houston is one of the nation's leading multiple myeloma clinics. I also see Baylor Research – Sammons Cancer Center in Dallas identified as a treatment center, but I don't have a specialist's name.

[Judedono]

Re: Have MGUS, and maybe something else?

by Judedono on Sat Feb 27, 2016 12:27 pm

Cissella -

Have you had a complete autoimmune panel done? I have IgM MGUS and was recently diagnosed with Sjogren's syndrome. Your dry eyes are a potential clue for Sjogren's.

Good luck!

[SlimMoe]

Re: Have MGUS, and maybe something else?

by SlimMoe on Mon Mar 21, 2016 12:20 am

Dr. Anderson is a myeloma specialist at UT Southwestern, which is a NCI Comprehensive Cancer Center. He is the only one in the Dallas area.

[soleful]

Re: Have MGUS, and maybe something else?

by soleful on Mon Mar 21, 2016 9:42 pm

In January 2016 the doctor told me I have MGUS. It is IgA kappa heavy chain. The doctor told me he feels this is because my autoimmune condition Sjogrens has worsened. I'll be having quarterly blood test for the next 2 years, if all goes well half yearly for 2 year. Than yearly. I'm seeking a second opinion with a MGUS / myeloma specialist on March 28th.