Private endocrinologist consultation?

[Flower]

I viewed the virtual conference video from Professor John Newell-Price where he answered a question on MEN1 and siblings with Cushing's. He also responded to another question where a patient believed it had taken 10-15yrs to reach a diagnosis. I'm really interested in these areas as I have a sibling with Cushing's who was subsequently diagnosed with cancer. I believe I possibly had Cushing's for 30 years before diagnosis. Looking at old photographs of me as a child aged 6-7yrs old, the facial features were present and this is when I started to become obese despite having the same diet as my siblings. My health started to deteriorate from the age of 13 with lots of infections etc.

Are there any definitive tests to establish whether Cushing's is inherited or for MEN1? Is it possible to tell how long a patient has had Cushing's and is there any correlation between duration of symptoms and time it takes for improvement in symptoms? Despite my Cushing's disease being in remission since surgery in 2002 I've had no improvement in my physical symptoms i.e. obesity, severe pain particularly in spine and legs, muscle weakness and exhaustion. There has been no resolution of any of my symptoms & I don't feel any better.

Would anyone know if it is possible to obtain a private consultation with an endocrinologist in order to obtain answers to these questions?

[member_41389]

Hi I don't know if you're aware of AMEND https://www.amend.org.uk/. This is a UK based group form people with multiple endocrine neoplasia (MEN) types 1, 2 & 3. They may be able to help. I believe at least some types of MEN are heritable but don't have any knowledge myself.
Hope you get answers.
Take care of yourself
Tim

[Flower]

Dear Tim,

Thank you for your helpful reply.

I wasn't aware of the Amend organisation, but I will certainly investigate the website details you included.

With many thanks.

Flower