[Live4Health]

Only MGUS can I still join?

by Live4Health on Sat Nov 12, 2011 10:09 pm

Hi Everyone,

Let me be the first to say that I have a lot of empathy for all of you who have multiple myeloma. My thoughts, good wishes, and prayers go out to you all.

I'd like to be in this forum because I have not been able to find any forums solely for those with MGUS. Although, as most of you know, there is only a small percent of a chance that I will progress to multiple myeloma it will stil be good to have a place to go to ask questions and discuss the small issues that I have.


Me:
I enjoy reading, theatre, movies, family, rolling through the park (wheelchair), and paint by numbers.

My disorder:
My rheumy ordered an IFE and Vit D (both new) on 7/15/11 along with the usual CBC, CMP C-Reactive Protein, and urinalysis. The IFE came back with faint paired IgG Kappa bands noted. I was diagnosed with MGUS by the hematologist/oncologist on 8/30/11.

No SPEP was done on 7/15, but on 10/12/11 the IFE was repeated and an SPEP was done. The IFE results were the same, and the SPEP showed 1800 mg/dL of IgG. Additionally xrays of my axial skeleton were taken and showed osteopenia, but no lytic lesions so a BMB was not done. Also, no sFLC assay has been done. The IFE and SPEP will be repeated in Jan 2012. If the IgG does not increase the tests will be done again in July, and annually after that if the numbers remain unchanged still.

My WBC is only slightly low. Although MGUSers are not suppoed to have symptoms, I have rib, and hip discomfort/pain, and peripheral neuropathy in legs and arms. The rib pain gets worse at night and can either awaken me or keep me from falling asleep.

Thanks for reading,
Brenda

[Dr. Peter Voorhees]

Re: Only MGUS can I still join?

by Dr. Peter Voorhees on Tue Nov 15, 2011 6:00 am

Welcome Brenda,

Serum free light chain testing would be helpful as it can help predict the likelihood of MGUS progression, As far as rib and hip pain is concerned, if there is no good alternative explanation for these symptoms, I would have a low threshold for additional imaging (e.g. MRI) to ensure that there are no myeloma lesions that were missed on plain x-rays. Lastly, patients with MGUS can also develop diseases related to myeloma, such as amyloidosis that can cause neuropathy. As such, if there is no good explanation for your neuropathy symptoms, a work-up for amyloidosis may be advisable if appropriate. Certianly, there are other diseases treated by Rheumatologists that can cause musculskeletal pain and neuropathy. As such, if there is an adequate alternative explanation for your symptoms, these additional tests may not be necessary. Your hematologist-oncologist should be able to advise you in this regard.

I hope this helps.

Take care!

Pete V.

[Live4Health]

Re: Only MGUS can I still join?

by Live4Health on Wed Nov 23, 2011 1:52 am

Hello Dr Voorhees,

Thank you for the welcome. It's good to know that I can become involved in this forum.

I appreciate your suggestions, and will try to bring up the possibility of including the sFLC assay to my doctor in Jan when the next SPEP is done. If the rib issues presist it does seem prudent to request an MRI as well. Although I don't like asking my doc about tests that he doesn't suggest, I have a feeling that I may need to be a little more assertive in this situation.

I've been taking neurontin for the neuropathy since I had a laminectomy a few years ago, but it seems that it is getting worse. The hip pain might be explained as part of fibromialgia, or inflammatory arthritis. Too the best of my knowledge there is no good explaination for the rib pain.

Thank you,

Brenda