What do we do?

[Noelle04]

Ladies, I really think we need to work on getting IGM recognized by the National Organization for Rare Disorders and as an Autoimmune condition.  I don't know if that's something that a doctor needs to do, if there's someone we can petition, etc.  Anyone want to help me out with this?

I'm still in remission, but dealing with the after effects of this (joint and muscle pain, weird infections, etc.).  

Let me know what you think!

[Aug10]

I'd love to help. I wonder if it would be helpful for all of us to send an email to NORD. Maybe that would bring awareness to them.  That we are all here dealing with this rare disease? Who at NORD do we contact? Do you have the email addresss ? Can you please share the contact you have?

[eluriajen]

I sent an email to NORD today. I don't know what to expect in response, but will let you all know what was said. I asked what steps would be necessary in order to have IGM recognized, and I also asked if they could provide us with resources and information regarding how we might go about finding someone to create a research study. maybe they will be able to help somehow, or at least give us some direction.

Jennifer

[Red11483]

I agree if anyone knows how I would be happy to help.

[JoJo45]

Hi there -

glad you are in remission, you know i am committed to anything, just limited by my health and energy

let me look in to it.

Jo

[Tiffany328]

Hi Noelle,
I totally agree with you. My symptoms is exactly like GM.  But my doctor thinks it may be something else....bc my prolaactin level is elevated..and he thinks it may also be prolactonoma.  Did you check your prolactin level? Does GM affect hormone level and CBC?  I'm so in pain with multiple abscesses and many hard lumps in my left breast. I will see my breast surgeon next week Wednesday. I hope she believes me and will know hoe to treat GM. But she didn't call it GM the other time it flared up in2009.  I'm printing some articles for her to see.....feels like I'm playing doctor myself.....so sad.....
Tiffany