Pituitary tumor symptoms: joint, muscle and body aches

Hello!I have been ill for over a year and I am trying to figure out what I have.The specialists have not been much help.I just saw that you mentioned your daughter having a weak pelvis from Cushings.I met with a neurologist who thinks I might have a metabolic muscular disease.I had blood tests done that showed low deha sulfate.When I looked that up I saw Addison's Disease can cause that.I thought I might have Cushings though.I keep on gaining weight and have no control over it and the muscle is completely gone in my arms,legs,pelvis,etc.I haveva big belly,arms and legs though.I saw that Cushings is usually skinny arms and legs.
Have you seen any cases where the deha sulfate in Cushings would be low instead of high?

I had surgery on 14.12.23 to remove tumor on pituitary gland. I was allowed home in 4 days but due to drop in sodium levels was readmitted and then home again on 24.12.23. Since then I have had constant ache at the back of my nose and in front of my head. I take pain killers every day. Can anyone tell me is this normal and if so when will these symptoms improve. I feel worse now than before I had the surgery which is a shame. Thank you in anticipation of responses. Matt.

Good morning, my son and his fiancé will be staying with me in Rochester for the duration. It entails the procedure on one day and a sinus debravement 5-7 days after. And sooo many appointments! I’m forever grateful they can come with me. I’m so excited. I’ve had a migraine for 5 months constantly from the tumor.

Hello @jenirog70,

I'm so glad that you posted about your positive experience at Mayo Clinic. It sounds like you have a great deal of confidence in your medical team, which is so important! I see from a previous post that your surgery will be on December 7. Will you be able to have someone with you?

I look forward to hearing from you again.

I am in Rochester. It has been an incredible experience coming here. I am from Chicago. I felt that going to University of Chicago was good medical care before. Mayo is so different. My team is so talented and thorough. The testing is lighting fast. From my first visit to surgery is 4 weeks! With a visit between for appointments. Yes it’s costing me for the medical vacations but, I wouldn’t have it any other way!

Hi @jenirog70, you will be in good hands at Mayo Clinic. Which Mayo location are you going to? Is it your first visit to Mayo?

I had my pituitary surgery x2, 20 years ago, and was told there is no correlation, but hormones are hormones and I will tell you this... I had very little pain before the Pnet and was told there is no pain with this cancer. Idiots!!!! I live with the most horrible pain and hardly anything will touch it and i'm taking enough meds to kill a small herd of cattle. I don't know what to say ,but just hold on for the ride. If you ever need to talk let me know and we will get together and see whats new. Just let me know. Take care,

Anthony

I have the same symptoms with my pituitary tumor. I’m getting it removed at Mayo on December 7th. I’m very hopeful that the symptoms go away after surgery.

Thanks, I will keep you updated. Thanks for the information.

Hello @ladyj5 and welcome to Mayo Connect. As you may know, those of us on Mayo Connect are not medical professionals, we are just patients like yourself who support and encourage each other. Based on what you have said, I would highly recommend that you seek a second opinion. At the very least, you should contact your doctor's office and ask for a referral to a specialist.

I would suggest that if you seek a second opinion, that you look for a multi-disciplinary medical center (like Mayo Clinic) or a university medical center in your area. If you would like a consultation at a Mayo Clinic facility, here is information for seeking an appointment, http://mayocl.in/1mtmR63.

I look forward to hearing from you again as you look for another doctor who can give you more help with this problem. Will you post again and let me know how you are doing?