Pituitary tumor symptoms: joint, muscle and body aches

Posted by khauert @khauert, Jan 12, 2020

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?

@cheryl1

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!

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@cheryl1 – Thank you for your kind words! You are right- to see your child go through this is a nightmare.

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@cheryl1 – Did you get the cortisol and ACTH testing done in Jacksonville? Endocrinologist? Any MRI yet?

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@astaingegerdm

@cheryl1 – Did you get the cortisol and ACTH testing done in Jacksonville? Endocrinologist? Any MRI yet?

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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

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@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.

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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

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@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!

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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?

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@astaingegerdm

@cheryl1 – Did you get the cortisol and ACTH testing done in Jacksonville? Endocrinologist? Any MRI yet?

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Yes 3 dexometsone suppression test. 24 saliva 2 day cortisol, MRI all at mayo in jacksonville

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Body aches pain muscle loss joint pain headaches hair loss extreme Fatique easy bruising weight gain in mid section and more all caused by pituatary tumor. I have Cushings and it took 4 to 5 years to get diagnosed. Hang in there and be strong!

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@bill54321

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?

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Thank you so much. Tough road ahead

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@bill54321

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?

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Thank you for your kind words

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@astaingegerdm

@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.

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Having ipss at mayo in Jacksonville Thursday. I hope Mayo will help me. I will keep you posted. I had ipss at mayo 12/3. 3mm cyst removed
It did not stain for acth. Now the ipss 3/12

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