10641686 tn?1411755180

hmm..chronic unexplained symptoms.. maybe my adenoma is active?

I'm trying to figure out, what is causing all my random symptoms. The doctors I've seen dismiss them all as depression, but I feel something else is going on with my body. In 2008 I saw a neurologist for pins/needles in hands and arms,hand clenching, and chronic vomiting. He did a nerve test (normal) and an MRI. He diagnosed me with a microadenoma on my pituitary gland and referred me to an endocrinologist. In the time between the diagnosis and being able to get in with endo (at least a month or 2) I was lactating. Of course by time I got in I was not lactating anymore and had become pregnant, so the doc didn't do much because my hormones would be altered at that point anyway due to pregnancy. I have had several MRI s since to check on it by different drs throughout the years and some think its an adenoma,some just think it's my pituitary anatomy. Regardless, whatever it is it hasn't seemed to get larger (as of my last MRI in 2011 or 2012). Really i left the diagnosis on the back burner figuring it was a mistake.My issue is that now I have a myriad of chronic symptoms, that get blown off, and don't know what to do anymore. Is it my adenoma? Ms? Fibromyalgia? Or is it all really a hypochondriac story? A few of my symptoms have been present for years, others are more recent, but I know they are not all caused by my depression diagnosis..and it really ***** when a Dr sees the depression diagnosis and comes to a conclusion before he even half-*** examines you.anyway, I guess my first stop should be the neurologist? Should I bring a list of all symptoms or only 1or 2 so I don't overwhelm him/her? What tests should I ask for? Any recommendations for neuro near Austin,tx?

Older symptoms : severe fatigue ( even with anti fatigue medication, still have to take naps), tingling/numbness/clenching of hands, stretch marks (before pregnancy) ,etc (memory acting up)
My newer symptoms include,but are not limited to: headaches,back aches, menstral cramping all month, black eye floaters,occasional blurred vision, feeling hot,feeling cold,night sweat (Cold), decreased appetite, decreased libido, weight loss ( I don't mind.. Gained 60lbs for unknown reason in 2008..tthenn between 2009 and 2011 had 2 children which boosted my weight up a little more) irritability, random mood swings, body aches etc...

I have begun to think something like fibromyalgia, but almost forgot about the adenoma and symptoms it could cause.. I don't know, confused, tired of doctors, and tired of feeling bad all the time.

Any help or advice would be greatly appreciated.
5 Responses
Avatar universal
No, not a neurologist. They don't know how to treat pituitary.

You need a pituitary center. Find one at larger hospitals or university centers.

Even so, some still can be endo-duds so get copies and read up. Test at 8am fasting. Keep your pee cold for all tests. ACTH has to be in a chilled tube and spun immediately (so many of mine were pure waste).

Depression is a symptom - so get to the right doctor - post back!
10641686 tn?1411755180
Thank you for the tips! My husband wants me to see a neuro first to rule out a few other things and to get a new MRI. If he tells me its all in my head I will continue on with my specialist search. My hands have really been acting up this week so hoping to find an appt soon. If I can I'll post a link so y'all can see the 'twitching' that's going on... The videos aren't that great but gives an idea.. I've been told it looks like vitamin or mineral deficiency. I did get blood work done recently and my calcium, potassium, and phosphorus were all normal, magnesium was not tested and my vitamin d was a little low.

Hand twitching: http://youtu.be/4gCQCTfYJbU

twitchy hour 3: http://youtu.be/bwh0ngI7rjY

Avatar universal
It is better to get the pituitary place to get the MRI as they have a different protocol for the MRI. It is a dynamic MRI. They can also get smaller slices. My last MRI for my neuro was 5mm slices- my pit mris are at least 3mm slices and are dynamic. A tumor can fall between the slices so the smaller the slices the better!

Pit people often had low D. But you need hormone testing.
10641686 tn?1411755180
update.. so i went to the neurologist,and she seemed really awesome. She thinks i have a couple things going on. So,lots of tests. I go back to see her this monday for all the results. MRl has already come back and does show a pituitary adenoma that has grown since 2008, i have appt with endocrinologist on the 30th. The neurologist also thinks my hand twitching is due to vitamin/mineral deficiency so we are doing a work up for that, and she thinks the pins/numbness & clenching is something with my nerves, so i have a nerve conduction test. yay fun. feel relieved that i'm not just a hypochondriac but still nervous and scared..
Avatar universal
Glad you are working on things.

The nerve tests are not fun... Good luck with endo and keep us posted.
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