Pituitary tumor symptoms: joint, muscle and body aches
Hi. I am new to this. And not sure I’m in the right category. I was diagnosed with a pituitary tumor in November. However, I have been experiencing terrible joint, muscle and body aches for a year now. No doctor knows why and nobody can confirm its from the tumor. I’m frustrated and becoming very hopeless and depressed. Can anyone with a pituitary tumor relate to body pain?
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
@cheryl1 – I’m glad you have a diagnosis but sorry it’s Cushing’s. Actually, I think the hardest time is time spent before getting a diagnosis.
In 2 weeks it’s 10 years ago that my daughter had her surgery to remove her pituitary adenoma. The body will return to normal afterwards. My daughter had gained a lot of weight which caused the characteristic purple striae- stretch marks. Her goal now is to eventually have plastic surgery to remove the extra abdominal skin. She is in good health, working hard and keeping fit.
I hope all goes well with you. Mayo is a great place for this. Whenever you have time and energy I would appreciate an update.
So nice to hear from you. I can only imagine what you have been going through. I have one child Kara, she is 24 yrs old. Just the thought of her having cushings bothers me. I pray your daughter is doing well and she has a rewarding, beautiful life!
@cheryl1 – Thank you for your kind words! You are right- to see your child go through this is a nightmare.
@cheryl1 – Did you get the cortisol and ACTH testing done in Jacksonville? Endocrinologist? Any MRI yet?
Yes MRI cortisol and acth. Dexamethasone suppression 3 times. MRI done locally in lake county and mri done at Mayo. Both showed tumor/ cysts. Dr Chaichanna did pss Dec 3rd. Removed tissue in area. Did not stain for acth. My levels are worse now and my glucose is horrible since procedure. The pathology report states tissue of pituatary. Going for ipss scheduled march 12th at mayo in jacksonville. I feel like I am slowly dying and have no life. Cheryl
@cheryl1 – hang in there! Hope they can locate tumor soon so you can get rid of it. Do you take anything for the blood sugar? My daughter had to take insulin Up to her surgery- her sugar went back down at once postop.
1000mg metformin twice a day. How is your daughter? She has and must be one of the strongest of the young for what she is going through. I don't know if I am that strong. Don't think so. Cheryl
@cheryl1 She took Metformin too. She is a very strong person -we couldn’t believe how tough she was when going through this horrible illness. You are strong too- see what you have been through already!
There is a Cushing’s group on Fb by the way.
I would appreciate it very much if you would post a brief update now and then when you have the energy!
God bless and keep you. In Korea, he saved me. He does exist. Be pro-active for yourself. Seek 2nd, 3rd. or 4th opinions if necessary After all, who know as much as you do?
Yes 3 dexometsone suppression test. 24 saliva 2 day cortisol, MRI all at mayo in jacksonville