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Questions and discussion about monoclonal gammopathy of undetermined significance (i.e., diagnosis, risk of progression, living with the disease, etc.)

Re: Diagnosis: MGUS

by Tarsam on Thu Aug 30, 2012 4:16 pm

Dear Yvie Dee
I was diagnose with MGUS approx 25 years ago and had been healthy till 2006.
MGUS is also thought to be smoldering Myeloma, this takes many years to develop into Myeloma as in my case. Myeloma is hard to diagnose. The symptoms are usually mild bone pain in the rib cage or spine or other large bones. A urine test to check for Bense Jones protien may help. This is how mine was diagnosed after going through other exhaustive tests. A lot depends on how old you are.
Hope this helps
Tarsam

Tarsam

Re: Diagnosis: MGUS

by Yvie Dee on Thu Aug 30, 2012 4:31 pm

Hi Tarsam. Wow 25 yrs! I was diagnosed with MGUS in 2008. I started getting pains on my back, my hip, the back of my neck and at times my ribs. When it goes away I think to myself "oh it's nothing" and just ignore it. I have weakness in my legs like if it's a major mission to walk. I limp for a while until I can walk a little normal. BTW, I'm 46. :-). But 2 days ago I was getting ready to go up the stairs in my townhouse and I got the worst pain in my lower back that it felt like it was paralyzing me.

Yvie Dee

Re: Diagnosis: MGUS

by Tarsam on Sat Sep 01, 2012 5:36 pm

Hi Yvie Dee,
The pains you are describing are similar to mine ie dull boney pain, it got sharper with movement.
Do not ignore these pains what so ever. Have yourself checked for Myeloma, this is a bone cancer and it destroys the bones from the inside and displaces the calcium from the bone into the blood stream. After I was diagnosed, I had an MRI scan which revealed damage to my vertibrae's , one of them was so badly disintigrated and it was compressing my spinal cord. I was very fortunate to be given treatment just in time. there was slight cracks in my ribs. Bones are a living matter, if something is wrong it lets you know just like other organs in the body. I have gone through a lot of treatments and survived. I also like to help others by sharing my experiences so that others can understand benefit from it. I would honestly urge you to see a Haematologist and ask him to check for Myeloma and get the neccessary treatment promptly. The longer it is left untreated, the more damage is being done to the bones and also suffer other organ damage through excess calcium in the blood. This may sound very daunting and may get you worried but you have to fight these problems.

Tarsam

Re: Diagnosis: MGUS

by Yvie Dee on Sun Sep 02, 2012 7:24 pm

Hi Tarsam. I do see a heme/onc doctor. I have an appointment to see him this Thursday and I do intend on mentioning my dull pains. I really despise the wait and watch with MGUS. But I know I am not the only one dealing with this. I really appreciate all you have shared with me because it really helps. Thank you. :)

Yvie Dee

Re: Diagnosis: MGUS

by Tarsam on Sat Sep 08, 2012 4:12 pm

Hi Yvie Dee,
How did your visit to the Haemo go? was there any diagnoses of any sort.
Regards Tarsam

Tarsam

Re: Diagnosis: MGUS

by Yvie Dee on Sat Sep 08, 2012 9:59 pm

Tarsam,

My doctors office rescheduled me for the 19th. :-( Thank you so much for asking. Will keep you posted after my visit that day.

Yvie Dee

Re: Diagnosis: MGUS

by Yvie Dee on Wed Sep 19, 2012 1:46 pm

Had my appointment today and I have to start IV iron infusions once again for my chronic anemia. However, he spent an hour with me discussing how he strongly feels its time I have a BMB and a Pet Scan. I told him about the pains I get, my chronic fatigue, etc. So infusions begin Monday. And I'm awaiting the scheduling of the tests needed and of course speaking with the insurance company.

Yvie Dee

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