[Dr. Peter Voorhees]

Re: Recently diagnosed with MGUS (further testing underway)

by Dr. Peter Voorhees on Sat Oct 11, 2014 3:09 pm

Dear Karen,

If this does wind up being MGUS, and there is a good chance that is the case, just be sure that your doctors consider the issues that Dr. Shain previously addressed. If the M spike is an IgM M spike, have you been evaluated for anti-MAG neuropathy? Could this be a manifestation of AL amyloidosis? Are those sclerotic abnormalities subtle findings of POEMS syndrome? Dis­tinguishing between MGUS and myeloma is rather easy in most cases. The challenge is to determine if the antibody being made is responsible for the neuropathy.

Keep us posted and good luck!

Pete V.

[sknc0604]

Re: Recently diagnosed with MGUS (further testing underway)

by sknc0604 on Sun Oct 12, 2014 5:41 pm

My IgM is the one that is above normal. We have talked some about amyloidosis, but have never heard of the other two. What are they?

[Multibilly]

Re: Recently diagnosed with MGUS (further testing underway)

by Multibilly on Mon Oct 13, 2014 9:51 am

Karen,

Have you tried googling the two topics? There's a wealth of information at your fingertips.

[sknc0604]

Re: Recently diagnosed with MGUS (further testing underway)

by sknc0604 on Tue Oct 14, 2014 1:30 am

Multibilly,

I have been looking up so much stuff and cross referencing and all I do is confuse myself more or can't find what I'm looking for. I keep trying.

I go in for my biopsy in the morning. They rescheduled it from today, so we shall hopefully know more when I get the results next week.

I will keep researching though lol. Pretty sure we all do.

[sknc0604]

Re: Recently diagnosed with MGUS (further testing underway)

by sknc0604 on Mon Oct 20, 2014 4:40 pm

OK I got my test results. My kappa light is what is running high. I have 1% in my bone marrow and he said as long as we don't have above 5% then we are OK and just gonna monitor blood every 3 months.

[sknc0604]

Re: Recently diagnosed with MGUS (but further testing underw

by sknc0604 on Sat Jan 03, 2015 9:09 am

OK so I am supposed to go back to see the oncologist the end of the month for next blood level.

I am in extreme pain in my lower back and hips. My husband took me to the hospital in the weeee hours of new year. The oncologist had wanted a scan done. The CT scan showed a bulging disc and narrowing of the spinal canal.

My question is: Do I need to call my oncologist and go in sooner for my blood work?

My pain is debilitating. I can't sleep and have a hard time walking even to the bathroom. I don't know what to do. Can someone give me advice?

[sknc0604]

Re: Recently diagnosed with MGUS (but further testing underw

by sknc0604 on Mon Jan 19, 2015 3:16 pm

Update for anyone that wants to reply. ER doctor was wrong. I have narrowing of the spine and all my lower discs are bulging, not just one. I go back to the oncologist tomorrow.

Anyone have any suggestions as to what I should talk to my oncologist about with this?

[sknc0604]

Re: Recently diagnosed with MGUS (but further testing underw

by sknc0604 on Mon Feb 16, 2015 7:46 pm

Well I guess everyone has just stopped talking to me OK