[PeterMichael]

Brand new to MGUS

by PeterMichael on Fri Mar 11, 2016 12:51 pm

Good Morning,

This is my very first post. I have been reading some of the MGUS posts. It has been confirmed as of Monday, March 7th that I have MGUS.

I have a great doctor whom I've been seeing for 10 years or more, so I completely trust her. She said the reason she ordered the tests were due to some symptoms I have been having. These are my symptoms ... Increased headaches (I am a migraine sufferer); the headaches have worsened and shifted to a different part of my head. Other symptoms are constant night sweats, pain in my joints, persistent dry cough, extreme fatigue (and when I say extreme, I mean extreme). I have always exercised and eaten healthy and some days now I am so tired I cannot get myself out of bed. I've seen the hematologist already. Both he and my MD concur that it is not the MGUS that is causing these symptoms and they are testing for autoimmune disorders. Nothing has come up so far.

Some of the posts I've read on this MGUS forum are stating the same thing, very symptomatic, not related to the MGUS, and also nothing else wrong after more testing. How can this be? I honestly don't see how one can have a blood disorder and have it not be symptomatic.

I'm so confused and frustrated. I am missing work and I know this is not "all in my head".

Any thoughts would be appreciated and any research anyone has done and could refer me to would be helpful.

Thank you.

[Little Monkey]

Re: Brand new to MGUS

by Little Monkey on Fri Mar 11, 2016 2:58 pm

Have you been referred to a haematologist yet?

[Multibilly]

Re: Brand new to MGUS

by Multibilly on Fri Mar 11, 2016 8:38 pm

Hi PeterMichael,

Welcome to the forum.

How do your hemoglobin and red blood cell (RBC) counts look from your CBC test? Either of these being low can lead to headaches, fatigue, etc.

You might want to also consult with a hematologist that specializes exclusively in multiple myeloma and related disorders. A myeloma specialist might be able to get to the bottom of your symptoms if they are related to MGUS. If you let us know what city you are in, folks on this forum can make some recommendations as to where to find a good multiple myeloma specialist.

[PeterMichael]

Re: Brand new to MGUS

by PeterMichael on Sat Mar 12, 2016 12:48 am

Good evening,

Thank you for your replies.

I live in Central California, 70 miles south of San Francisco.

Any help or suggestions on a myeloma specialist would be helpful.

Thank you,
PeterMichael

[Multibilly]

Re: Brand new to MGUS

by Multibilly on Sat Mar 12, 2016 9:54 am

There are a few folks on the forum that see specialists in the Bay Area. UCSF is a top notch multiple myeloma research facility and Dr. Jeffry Wolf heads up their myeloma department there. There are also some folks that utilize the Stanford Cancer Center in Palo Alto.

I personally think it would be worth the time making the drive up north to get a consult with a leading specialist.

You can find contact information for the two centers here:

https://myelomabeacon.org/resources/treatment-centers/#California

[PeterMichael]

Re: Brand new to MGUS

by PeterMichael on Mon Mar 14, 2016 8:21 am

Thank you Multibility, for the referrals.

UCSF sounds great and thank you for the doctors' name.

I appreciate it very much.
PeterMichael