Pituitary tumor symptoms: joint, muscle and body aches

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?

This is the second time my asking this and no reply. I was diagnosed on July 10/2023 with pheochromocytoma by plasma blood work. My PCP have never treated this condition. My B/P is out of control. All the scans no tumor is found now what do we do next? Some days I can hardly function from taking so much pressure medications. Please respond.
LadyJ

@dearley
I hope you had the MALS surgery and that you are OK. I had the same- it took 7 years before diagnosis. I had MALS surgery 2015 and a stent placed shortly after. I had another stent placed last fall after a time of pain and other GI symptoms.
I don’t know why you got the Fibromyalgia diagnosis- no pain. Fibromyalgia actually is a recognized disease now. There are still many physicians who don’t know enough about how to diagnose it. I have it, not bad now. My youngest daughter was diagnosed at 15, my son at 10 and recently my oldest daughter. All diagnosed by a rheumatologist.

My first symptom of a problem was galactorrhea at about age 34–my son was 5 and I was not longer breastfeeding. I reported to the OB but he was not concerned. I would have times with weight gain no matter what I did, then loss, carpal tunnel syndrome, intermittent insomnia–sort of waxing and waning stuff. After a hysterectomy at age 52- I developed galactorrhea again and this time a prolactin level was checked- it was high–an MRI then showed an 8-9 mm pituitary tumor. An IGF-1 level was checked but was in the high normal range so I went on cabergoline–I noticed that my wrists and fingers seemed a little smaller but didn't think much of it. When I saw endo #3 she had reviewed my medical record and walked in the room and said I think you have Acromegaly! She put together the pieces of hypertension, colon polyps, carpal tunnel syndrome, wedding ring enlargement, asked to see pictures and ordered repeat labs and the were elevated. I was referred for surgery in 2015 and age 53. This did not cure me and I have been on and off meds for years and now have a 5 mm recurrent tumor. Quite the story! On average it is about 10+ years to diagnose Acromegaly.

Hello @bhampton1962 and welcome to Mayo Clinic Connect. Often when a person has a rare diagnosis such as this it takes a long time before the diagnosis is made. As Acromegaly is certainly a rare diagnosis and I wonder if you could share a little about your journey finding the correct diagnosis. For example, how long did it take before you got the correct diagnosis? What other symptoms, besides the pain and stiffness, led to this diagnosis?

I hope that you are feeling better now and have some symptom relief. What type of treatment has helped with your symptoms?

I too had a pituitary tumor diagnosed about 10 years ago and thought to be prolactin secreting. I had a great deal of pain and stiffness and eventually saw an endocrinologist who did additional testing and diagnosed me with Acromegaly. This is a rare disorder but make sure you have proper testing as it can cause lots of health issues!

I too was told by Mayo back in 2017 that I had Fibromyalgia. Muscle pain was not one of my complaints. I was severely fatigued & lightheaded. Sometimes, I think Fibromyalgia is a ‘catch-all’ for unknown. Now…6 years of suffering later, I found out that I have severe stenosis of my celiac artery (in abdomen) caused by MALS. What is it w/all the Fibromyalgia diagnosis? It’s sad. 🥲

Thank you

@ralvarez38
I just checked online- i don’t see the West Palm office listing. There is one of the Cleveland Clinic hospitals as well as specialty clinics in Weston, FL.
I agree that you need to see someone soon since you are feeling worse.
What I would do is call Cleveland Clinic- in Ohio or Florida and find out where you can be seen in the near future.
If you need specific pituitary treatment I still recommend UVA in Charlottesville, VA.