1. < Neuroendocrine Tumors (NETs)

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?

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sturns | @sturns | Dec 2, 2022
In reply to @cheryl1 "My endo at mayo called 2 nights ago. Dr Meeks. He has such a calming manner...." + (show)
@cheryl1

My endo at mayo called 2 nights ago. Dr Meeks. He has such a calming manner. I have had very loose bowel movements since my surgery May 7th. He doesn't think related to the removal of adrenal glands. Suggested I see gastro intestinal Dr. I see a local Dr tomorrow. He also said to stop the metformin since my glucose testing 125 and below in mornings. The burning in legs still bad. I guess I am going to take slow and one step at a time. Thanks so much for your concern. I thank Dr Chaichana at Mayo for doing my 2 pituatary surgeries. It is amazing what he can do. I do have much weakness in legs. This is common with Cushings disease. You lose all muscle and I mean all! I am turning 63 the 29th and the bod looks like 83.

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I think after the surgeries and they get your hormone levels corrected you will see a big change.
So stay strong even if it's easier said then done, but I've been there, 22 years, and now have p net, fun!!
I am sure your still just as beautiful as can be, remember we are our worse critics. I wish you well and my prayers are out there for you. Take care. If it weren't for my wife I don't know what i'd do..
Anthony

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Dec 2, 2022
In reply to @sturns "In 2000 I had 2 pituitary tumor operations. Large tumor, but they had to take out..." + (show)
@sturns

In 2000 I had 2 pituitary tumor operations. Large tumor, but they had to take out the p-gland and I have had full hormone replacement since, I turn 60 in a couples of months. I am having pain that sometimes is off the scale. The dr. say's it has no correlation to the pnet I have. I beg to differ. They don't know enough about this cancer to really know. I have 23 tumors in and on my liver with that many or more on my lymph glands and else were within my upper torso. I had no pain with the pituitary issue but that was me and we are all different. Hang in their and get a specialist in net for sure.

Anthony

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@sturns
Are the numerous tumors in your liver and lymph glands related to the pituitary tumor? What’s the plan for them?
You have been through a lot.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Dec 2, 2022
In reply to @georgiamartin "I am having same problems! Diagnosed with enlarged pituitary this last summer and have incredible pain..." + (show)
@georgiamartin

I am having same problems! Diagnosed with enlarged pituitary this last summer and have incredible pain n my joints, muscles and nerves, feel as if my joints are dissolving, getting worse daily!!Endocrinologist found a low sodium level, so was on restricted fluid for several weeks, getting blood tests every day for a week, sodium level back up to normal, still no change🤷🏼‍♀️!
Neural surgeon wants to “wait and see”, new MRI is in July!!
Meantime I am suffering and getting worse every day!!
Found a new GP, thankfully, who LISTENED, and is sending me for a bunch of blood tests and referring me to a chronic pain clinic!
Any suggestions gratefully accepted

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@georgiamartin - It must be difficult to live with that pain for so long and no answers.
Did your Endocrinologist test for all the pituitary hormones?
It seems like a long time to wait so many months for another MRI. What does the Endocrinologist say about that?

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Dec 2, 2022
In reply to @sturns "My first surgery was 22 years ago and she messed up and took less than 5%..." + (show)
@sturns

My first surgery was 22 years ago and she messed up and took less than 5% of the tumor out so 8 mo's later I went to UVA and they did the job right. I have had no problems since except dealing with hormone replacement. The tumor got pissed off after the first surgery and wrapped around the artery and they took out as much as they could and I still have had no issues besides the net that has given me problems. I think she will do just fine. They did have to take the gland out but you can survive with just the stalk of the P-gland.

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@sturns - My daughter also had her surgery at UVA - 11 years ago. Excellent facility. Who was your surgeon? My daughter had Dr. Oldfield- wonderful. Unfortunately , he has passed away.

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sturns | @sturns | Dec 3, 2022

Yes they are the best , my Dr. was Dr. edward laws and endo was Mary lee Vance, both great and if I had to have a hospital experience it would be there. I also met the man who invented the gamma knife. He looked just like Einstein and came in, sat down like I was his only patient for the day and explained why the GK couldn't be used, because the tumor was to big. But he took the time and he didn't have to. That's what it's about, making the patient calm and informed so they aren't so nervous. Glad she had a good experience to.

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sturns | @sturns | Dec 3, 2022
In reply to @astaingegerdm "@sturns Are the numerous tumors in your liver and lymph glands related to the pituitary tumor?..." + (show)
@astaingegerdm

@sturns
Are the numerous tumors in your liver and lymph glands related to the pituitary tumor? What’s the plan for them?
You have been through a lot.

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I get tested a lot for my hormone levels and they say the Pituitary issue has nothing to do with the NET I have. I disagree, but what do I know. I do know the pain can go off the scale and mentally it feels like my hormones are off but last time I had Blood work everything was good..?? I am being seen by 2 dr.s, one is the Moffitt center and my treatments are from Florida cancer specialist's because the drive to Moffitt is 4 hours one way, but they are the main one because they are one of the top 5 for this type of cancer. My wife had stg. 4 metastatic melanoma and they just wanted to put her on a clinical trial to give her another year or two. The 7 large tumors are gone and that was 7 years ago but the side effects are real bad, but she's here.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Dec 3, 2022
In reply to @sturns "I get tested a lot for my hormone levels and they say the Pituitary issue has..." + (show)
@sturns

I get tested a lot for my hormone levels and they say the Pituitary issue has nothing to do with the NET I have. I disagree, but what do I know. I do know the pain can go off the scale and mentally it feels like my hormones are off but last time I had Blood work everything was good..?? I am being seen by 2 dr.s, one is the Moffitt center and my treatments are from Florida cancer specialist's because the drive to Moffitt is 4 hours one way, but they are the main one because they are one of the top 5 for this type of cancer. My wife had stg. 4 metastatic melanoma and they just wanted to put her on a clinical trial to give her another year or two. The 7 large tumors are gone and that was 7 years ago but the side effects are real bad, but she's here.

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@sturns - I’m sorry to hear about your wife’s struggle with her treatments, but the results of the clinical trial she is in are incredible!
The two of you are fighters and you apparently have access to the best cancer care.
I agree that it seems that it is more than a coincidence to have the pituitary problems and NET.
My daughter also had Mary Lee Vance- superb.
Her surgeon said that he tried to get everything but there was a possibility that some cells remained near the carotid artery. He also said that if she needed more surgery it could be done with Gamma knife.
It has been 11+ years and so far all looks good.
She had extreme body pain after surgery but was lucky to find a good pain management doctor where we live. It took time to get rid of it.

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sturns | @sturns | Dec 3, 2022
In reply to @astaingegerdm "@sturns - I’m sorry to hear about your wife’s struggle with her treatments, but the results..." + (show)
@astaingegerdm

@sturns - I’m sorry to hear about your wife’s struggle with her treatments, but the results of the clinical trial she is in are incredible!
The two of you are fighters and you apparently have access to the best cancer care.
I agree that it seems that it is more than a coincidence to have the pituitary problems and NET.
My daughter also had Mary Lee Vance- superb.
Her surgeon said that he tried to get everything but there was a possibility that some cells remained near the carotid artery. He also said that if she needed more surgery it could be done with Gamma knife.
It has been 11+ years and so far all looks good.
She had extreme body pain after surgery but was lucky to find a good pain management doctor where we live. It took time to get rid of it.

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Yes, Dr. Vance is awesome, very focused, professional but she does have a caring side as much as she tries to keep it low. Dr. Laws is at Brigand young woman's hospital now or retired but I don't think people like them retire. My artery had tumor still wrapped around it but that was 22 years ago and no issues with it. I never had pain until I had net. and extreme it is. I had so many issues with pain management, so many treat you like a criminal but this, meds, were made for this... So I went to palliative care and they are like gold and i'm going through the VA. They truly are wanting to help me with the pain. It gets to the point where it will take me to my knees. Nothing, no pain , to a ten just like that. Not fun. Good luck for both of you. Thanks for responding, being alone with no outlet to people like us is very lonely. It's as I am the only one and well, i'm not, so thank you for all your reply's. They were/are appreciated.

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georgiamartin | @georgiamartin | Dec 4, 2022
In reply to @astaingegerdm "@georgiamartin - It must be difficult to live with that pain for so long and no..." + (show)
@astaingegerdm

@georgiamartin - It must be difficult to live with that pain for so long and no answers.
Did your Endocrinologist test for all the pituitary hormones?
It seems like a long time to wait so many months for another MRI. What does the Endocrinologist say about that?

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I phoned my Neuro surgeon 10 days ago and said, "I cannot wait until July for another MRI, I am in continual agony, feel like all my joints are disintegrating, I need help now!!!
So, I have a new appointment for Dec 21. In the meantime I am doing EFT " tap" method for calming the nerves, praying through healing scriptures in the Bible, knowing the Lord Jesus wants me healed and enjoying the life he has given me!!
All blood tests from New GP came back normal!!🤷‍♀️
feel blessed, have my very own medical team👍 and I'm pushing myself to stand up and be as active as possible for my mental state of mind.
I am still active in my Interior Design business and it helps my mental state of mind to get up and move and create!!!
blessed Christmas, stay hopeful and advocate for yourself everyone!!

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georgiamartin | @georgiamartin | Dec 4, 2022

Same as my experience, still on the journey with getting the right solution, have to advocate for yourself!!!keep pushing!! Cheering you on

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