Mgus

I have been diagnosed with MGUS.  I live in a very rural area and have a limited source of information on this disease.  I have had all the testing done such as the fabulous experience of a bone marrow biopsy.  Now I have been given this acronym and am left wondering is any new ache or pain might be a sign of the MGUS slipping into MM.  I also had testing done for Amyloidosis and to be honest the thought of developing this is more scary then MM.  Does anyone else with MGUS feel like they are just waiting for the next shoe to fall so to speak?  I am becoming someone who is obsessive about any new or imagined new symptom.  I have never had to take any kind of medication before and since I have been diagnosed I now take daily medication for joint stiffness and pain, thyroid, lasix, and allergy medication.  I feel like I am falling apart but more importantly I feel I am out of control of my health and thus my future.  Any ideas? 

Hi,

I'm in the same boat - new MGUS dx, feel like I'm a ticking timebomb, and don't want to live my life 3-months at a time between follow-up visits.  To complicate matters, I have a spinal cord injury so I already have a bunch of weird aches and pains that makes it that much more difficult to figure this out.

 How are you doing??

Melissa

 

On 7/9/2007 Honeybee68 wrote:

Hi,

I'm in the same boat - new MGUS dx, feel like I'm a ticking timebomb, and don't want to live my life 3-months at a time between follow-up visits.  To complicate matters, I have a spinal cord injury so I already have a bunch of weird aches and pains that makes it that much more difficult to figure this out.

 How are you doing??

Melissa

I am sorry I haven't responded to your message before now.  I am just figuring out how to use this site!  I have been in and out of the Mayo Clinic.  I was misdiagnosed at another institution and now the Mayo Cllinic tells me I have Multiple Myeloma and secondary amyloidosis.  I guess you could say I feel like the other shoe has fallen.  My MM is stage 1 but I now feel like I am waiting to have it progress.  Maybe I will feel better when I now a plan.  I am still in testing stages and just wish it would all go away.

Cindy