1. < Neuroendocrine Tumors (NETs)
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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?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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cheryl1 | @cheryl1 | Jul 20, 2020
In reply to @astaingegerdm "@cheryl1 She took Metformin too. She is a very strong person -we couldn’t believe how tough..." + (show)
Profile picture for Ingegerd Enscoe, Alumni Mentor @astaingegerdm

@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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I had 2 pit surgeries and a BLA all within 5 months at mayo. I am now in recovery stage trying to build muscle and loose weight. I realize now what a challenge I have ahead of me.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 20, 2020
In reply to @cheryl1 "Having ipss at mayo in Jacksonville Thursday. I hope Mayo will help me. I will keep..." + (show)
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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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Hello @cheryl1,

I was just wondering how you were doing? I hope your appointment at Mayo/Jacksonville was helpful to you. Will you post again with an update?

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Teresa, Volunteer Mentor | @hopeful33250 | Jun 18, 2020

Hello @cheryl1,

In March you had an appointment scheduled at Mayo/Jacksonville. I hope that appointment went well. Did you gain any new information? I hope you are feeling better. I would love to hear from you.

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cheryl1 | @cheryl1 | Mar 7, 2020
In reply to @astaingegerdm "@cheryl1 - hang in there! Hope they can locate tumor soon so you can get rid..." + (show)
Profile picture for Ingegerd Enscoe, Alumni Mentor @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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1 reply
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cheryl1 | @cheryl1 | Mar 7, 2020
In reply to @bill54321 "God bless and keep you. In Korea, he saved me. He does exist. Be pro-active for..." + (show)
Profile picture for bill54321 @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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cheryl1 | @cheryl1 | Mar 2, 2020
In reply to @bill54321 "God bless and keep you. In Korea, he saved me. He does exist. Be pro-active for..." + (show)
Profile picture for bill54321 @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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cheryl1 | @cheryl1 | Mar 1, 2020

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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cheryl1 | @cheryl1 | Mar 1, 2020
In reply to @astaingegerdm "@cheryl1 - Did you get the cortisol and ACTH testing done in Jacksonville? Endocrinologist? Any MRI..." + (show)
Profile picture for Ingegerd Enscoe, Alumni Mentor @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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bill54321 | @bill54321 | Feb 29, 2020

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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2 replies
Profile picture for Ingegerd Enscoe, Alumni Mentor
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Feb 29, 2020

@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!

REPLY
1 reply
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