Acromegaly Support Group

Oh Shelley im so sorry to hear you feel scared, I hope your family are rallying round, you have had such a time of it.We were all tested for the AIP gene, this came back ok, would that be the same as mens1, I hope you start getting some good treatment. Take care

Shelley I am sorry for your situation! I hope you can at least now ge some better treatment and results so that your life can be lived with a better quality. I hope you can start feeling better soon! I will be sending healing and peaceful energy to you! Keep us posted on your progress and treatment. You have friends out here that care and want the best for you!

Trena

Sorry I read the post before me SHERRY!! SHERRY!! Sorry...

Hi Sherry:

I am very sorry to hear this latest news. MEN1 is a big concern for all of us with acromegaly. My son, who is 20, has recently been diagnosed with hypercalcemia. Further tests for MEN1 have been inconclusive. Do you mind if I ask what type of genetic test you had done? My prayers are with you. Mishxo

Honestly, I do not know exactly which tests were taken but it was a lot. My insurance will not pay for genetic testing but whichever tests the endo showed that I indeed have MENS type 1. My pituitary if affected, thus the acro. I have three tumor on my thyroid (hypocalcemic,hyperparathyroidism) and my pancreas is affected as well ( some high levels, digestive enzmes don't work). This is just what they know so far. I am undering an MRI, Thyroid US, Thyroid scans, Pancreas soemthing scan and pet scan in the next week or so.
No, I do not have the support of my family. I do not think they could even tell someone what I have wrong with me to tell you the truth. My children are to be tested next week for MENS. Keep them in your prayers please.

Sherry: Please know that we are here for you. I have done some research on MEN1 and the good news is that with careful monitoring of the disease it can be controlled. Your children are very young and the disease does not affect people into they are older, so first, hopefully they do not have MEN1 and secondly, with modern technology there is always a possibility of a cure. Mishxo

Endo seems to think that my MENS began just after puberty and went undiagnosed for so many years. My 13 year old daughter is beginning to show signs of some thing I went through at the same time. I just keep praying!

Sherry, I am so very very sorry. How did you know over the years when you had too much growth hormone, what were your symptoms.
Ulrike

Hi Sherry: I hope that your children have not inherited the MEN1 gene. You have to have 2 or more positive test results to prove that it is MEN1, unless of course you have the genetic testing done. I have been told by my doctor that thyroid conditions and other endocrine problems run in families, it doesn't necessarily mean that your children have MEN1. I will pray for you and your children. Take care, Mish

:( so sorry Sherry for all that you and your children are going through