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Pituitary macroadenoma vs myasthenia

Posted by skhollandmt @skhollandmt, Jun 25, 2021

I was diagnosised with a macroadenoma after having an MRI for muscle weakness and pain. 4 years later I am finally getting consults at Mayo. It's time for the tumor to be removed. But, still no explanation for the other symptoms. The doctors in Montana have come up with a seronegative myasthenia. They started me on mestinon, which does help with the extreme fatigue. But how can it be myasthenia without a positive EMG or blood tests? (I do have a droop in the right eye). I'm so frustrated and just was looking for others to talk with. I've had vitamin D levels corrected with supplements, had all the other vitamin levels tested. Had MRI's from head to toe. Even had a spinal for a MS panel (negative except some elevated protein levels). But I feel like hell. I was told "we believe something is wrong but until it's bad enough we can figure it out there's nothing we can do". I was even sent to therapy for possible conversion disorder. I trip, I have very poor fine motor skill, extreme fatigue and had caused me to quit one of my jobs, have lost all desire to try to do anything I enjoy (like fishing). This has caused terrible depression and had taken away my will to continue to live some days. I've been told because my tumor is non functioning this is not tumor related. The pituitary stalk is deviated and the tumor is trying to wrap around the ICA. Anyone have comments/suggestions or just a story to share with me? I would so love to find some emotional support by those with similiar stories. Thanks in advance.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 25, 2021

Hi @skhollandmt, I added your discussion to the Brain Tumor group (https://connect.mayoclinic.org/group/brain-tumor-support-group/) and the Autoimmune Diseases group (https://connect.mayoclinic.org/group/autoimmune-diseases/) to help connect you with other members who have experience with pituitary macroadenomas, like @medfordor @daphne2020 @astaingegerdm @rubyjane @gemttaz @rubyjane @dmedina71

You can read about some of their experiences in these discussions:
– Saying Hello! Just had surgery for a pituitary tumor https://connect.mayoclinic.org/discussion/saying-hello-1/
– Pituitary microadenoma causing hormonal issues https://connect.mayoclinic.org/discussion/pituitary-microadenoma/
– Pituitary macroadenoma tumor removal and short term memory loss https://connect.mayoclinic.org/discussion/pituitary-macroadenoma-and-short-term-memory-loss/

Skhollandmt, I can understand your need for understanding, hope, and support as you search for answers. Are you now in care at Mayo Clinic or will you be heading there soon?

REPLY
1 reply
skhollandmt | @skhollandmt | Jun 25, 2021
In reply to @colleenyoung "Hi @skhollandmt, I added your discussion to the Brain Tumor group (https://connect.mayoclinic.org/group/brain-tumor-support-group/) and the Autoimmune Diseases..." + (show)
@colleenyoung

Hi @skhollandmt, I added your discussion to the Brain Tumor group (https://connect.mayoclinic.org/group/brain-tumor-support-group/) and the Autoimmune Diseases group (https://connect.mayoclinic.org/group/autoimmune-diseases/) to help connect you with other members who have experience with pituitary macroadenomas, like @medfordor @daphne2020 @astaingegerdm @rubyjane @gemttaz @rubyjane @dmedina71

You can read about some of their experiences in these discussions:
– Saying Hello! Just had surgery for a pituitary tumor https://connect.mayoclinic.org/discussion/saying-hello-1/
– Pituitary microadenoma causing hormonal issues https://connect.mayoclinic.org/discussion/pituitary-microadenoma/
– Pituitary macroadenoma tumor removal and short term memory loss https://connect.mayoclinic.org/discussion/pituitary-macroadenoma-and-short-term-memory-loss/

Skhollandmt, I can understand your need for understanding, hope, and support as you search for answers. Are you now in care at Mayo Clinic or will you be heading there soon?

Jump to this post

Thanks for all the information and adding me to the other groups. I will see Mayo 9/1 and 9/2 for tests and consults. I'm very hopeful for some real answers but whatever has been going on for me has drastically worsened since April. I think my tolerance level has been tested to the breaking point and that's what's adding to my depression. You get so tired of not having answers. I'm a nurse and totally understand that after negative tests doctors begin to believe your symptoms either don't exist or are directly caused by mental health and not a physical disorder. I see my quality of life going down the drain and can't believe some physicians will continue to tell me there's nothing more to do. Mayo is "my last hope" in many ways so I'm praying they can help me! Yet at the same time I'm scared they will also find that "after extensive testing we cannot find anything wrong with you". I read so many people on the pituitary forums having similiar symptoms......yet I've been consistently told that pituitary tumors that are non functioning cannot cause headaches, or fatigue, or muscle weakness, depression, loss of balance, dizziness, etc. Thank God for this group and being able to connect with others!

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 28, 2021
In reply to @skhollandmt "Thanks for all the information and adding me to the other groups. I will see Mayo..." + (show)
@skhollandmt

Thanks for all the information and adding me to the other groups. I will see Mayo 9/1 and 9/2 for tests and consults. I'm very hopeful for some real answers but whatever has been going on for me has drastically worsened since April. I think my tolerance level has been tested to the breaking point and that's what's adding to my depression. You get so tired of not having answers. I'm a nurse and totally understand that after negative tests doctors begin to believe your symptoms either don't exist or are directly caused by mental health and not a physical disorder. I see my quality of life going down the drain and can't believe some physicians will continue to tell me there's nothing more to do. Mayo is "my last hope" in many ways so I'm praying they can help me! Yet at the same time I'm scared they will also find that "after extensive testing we cannot find anything wrong with you". I read so many people on the pituitary forums having similiar symptoms......yet I've been consistently told that pituitary tumors that are non functioning cannot cause headaches, or fatigue, or muscle weakness, depression, loss of balance, dizziness, etc. Thank God for this group and being able to connect with others!

Jump to this post

Skhollandmt, keep asking questions. And as those answers raise new question, ask some more. Together with your Mayo team, you'll get to the bottom of this.

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