Did anyone checked for prolactin level and CBC count?

[Tiffany328]

Hi there,
My doctor never heard of IGM.  And, he's refusing to discuss further on this  term.  He kept saying that my prolactin level is elevated and requires medication to dry upmthe milk production. I'm not pregnant and stopped nursing over a year.....not sure why prolactin would be high.  He even suggested doing MRI to check for possible tumor in my pituitary gland.  He believes it may be prolactinoma than IGM.....
Anyone can help me withbthis?

[Aug10]

Hi Tiffany
My levels were tested and came back in normal
range. My CBC is a different story due to being
Low iron anemia. I did breastfeed all four of my
kids. It had been two years that I stopped
Breastfeeding when he discovered the GM,  so
my OB GYN thought for sure it would
be high but nope it was normal? Just another
mystery of GM?

[Noelle04]

My prolactin levels were always normal, which I think was why it was so difficult to diagnose me.  When I was going through this, NO ONE had ever heard of IGM. It seems to be alot more common now, thank goodness.  Anyway, normal prolactin but when the IGM was active, my WBC was always 14,000+.  

[ruostentatious]

There is also another thing to have them test, unfortunately I will have to find my Med records foe the exact name...

My doctor always winces when she reads that it is still in my cultures but its so slight but never there before.

[JoJo45]

I think it is quite likely that you have GM - at least as likely as the other possibilities, so it definitely should be explored.

I would expect the breast specialist to take a core biopsy and look for GM features: one of my early biopsies read: breast tissue with inflammatory reaction including non-necrotizing granulomas and multinucleated giant cells.

I think the one really good sign in your favour is that you had an episode of this or something similar in the past and it self-resolved.  I know it was not nice, but it went away.  Maybe your body can clear it again without too much intervention.

Let us know how the appointment goes.

Jo

[Tiffany328]

Hi Jojo
Thank you for your clear answer.  Everyone would think having a husband as a doctor is easy when it comes to illness. Well....not in the case of a rare disease.  My husband is becoming more and more impatient with my questions and suspicion of GM.  Obvious , he has not heard of GM. and he thinks I'm jumping into conclusion to quick.  He likes to believe I have prolatctinoma, which he can identify in his medical text book.  This is really so frustrating.  But, I'm looking forward in seeing my breast surgeon on wednesday.  I think she will be more open minded.  I remember when I last saw her in 2009, she was very willing to do what I wanted.  She was open for discussion. I guess this disease just puzzled her as well.  But unfortunately, I didn't read about GM before.  I didnt meet you all. I think now, I have a better direction to head to.  Although everything seems hopeless, this finding of GM gave me a glimpse of light, I pray God will open the window and give all of us his healing power!  
Thank you for being here for me, girlfriend!  

[JoJo45]

Can you get a second opinion? Are you in the US?

I would submit to the MRI to rule out this possibility. I do know other GM sufferers have raised prolactin levels.

Others have had to push for a doctor to recognize this disease as well, I know it is frustrating, try to get a second opinion with another doctor more open-minded would be my advice.

Sorry, I know you must be very anxious, I was at the stage you are at now, no one knew what I had, either inflammatory breast cancer or IGM, and it was frustrating to then learn no one knew how to treat IGM...my breast was so painfully and red, hot, engorged, I was so distressed that I was not being treated properly - I pushed and pushed to find a good rheumatologist to work with my breast surgeon.

All of this is in some part the nightmare of having such a rare disease.

I am sending good thoughts your way.

JO