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06/18/2008 04:52 PM

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Fuhgetabowdit
Posts: 13
New Member

Hi I am new to the group and need some help. I had an elevated Prolactin level and had an abnormal MRI showing a possible microadenoma about 3 years ago (asymmetric prominence of the left portion of anterior pituitary). I have been having joint pain, stopped period 3 years ago,nipple discharge, weight gain,head aches in left eye, weight gain in abdomnal area,extreme fatigue and very high blood pressure. The doctors put me on many different B/P medications and tried to control the B/P which got worse and I ended up in the hosp. Suddenly I became a cardiac patient and no one payed attention to the possible adenoma. After not going back I just went to a new Neurologist and he ordered an MRI which I did yesterday and I am waiting for the results. The treatment I have been getting for the past three years scared me away from the doctors here in Florida. I know it sounds crazy but I was just getting the run around and no one was listening to me. I had so much fatigue I couldn't get the energy to go. Has anyone else had an abnormal MRI years before the diagnosis of adenoma? It also had moderate to severe white matter disease and distribution of lesions. Any info will help about any of this. I have made the decision to finally get to the bottom of it.
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06/19/2008 06:25 PM
NYSUNSHINE
NYSUNSHINE  
Posts: 177
Member

hey i also had missed periods for years and breast discharge and migraines and fatifue and loss of hair, etc. I am currently on cabergoline but my new endo says i dont need a new MRI because my levels arent that high, eventhough i want to make sure the microadenoma isnt getting bigger, he thinks he hasnt. I suggest you get another MRI and a new Endo. Get to the bottom of this before it gets worse. good luck and write to me anytime.

06/19/2008 07:18 PM
Fuhgetabowdit
Posts: 13
New Member

Hi NYSUNSHINE Thanks for writing to me. I am going to get a new endo as soon as I get the results back. Maybe I will go back to Long Island and see a doctor there. I hate the medical care here in Florida. I am going there to visit family next month. I have read that seeing an endo that specializes in Pituatary is good. There is also a place in Texas that can do a whole workup at MD Anderson. When was your last MRI?Have you been going once a year? I read your profile and was wondering how is your daughter doing? How did you find that liver problem? Sue

06/20/2008 07:06 PM
NYSUNSHINE
NYSUNSHINE  
Posts: 177
Member

WELL my last MRI was like 3 years ago, can you believe that.??

It is a good idea to get an endo that specializes in the pituatary.Wow you are willing to travel so far as long isl;and for a doc? I bet in florida they have to have somewhere good doctors,....and about my son he does have liver disease and ITP the rare blood disorder. They found out everything with blood work on his enzymes that were elevated plus his stomach pains. I am a very busy person with my son ...


06/21/2008 07:07 PM
herro
herro  
Posts: 204
Member

Welcome! i haven't been reading posts as often as i used to. go to website-pituitary network assoc.-there is a list there of pit drs and endocrinology centers. how elevated was your prolactin? did dr suggest any meds? i would start with blood tests for ALL hormones...ask for another mri, get copies of reports yourself. get a second opinion. keep trying, you have to keep plugging away even if you feel exhausted. i had physical problems about 5 yrs before a dr finally figured out the pit adenoma part. i had weight gain, acne, periods stopped, nipple discharge(sore breasts), got very hairy, high bp, headaches on left side of head, etc.etc. etc. read my profile.... i have another follow-up mri scheduled for next mth. sometimes i just don't want to know....

06/22/2008 08:19 AM
Fuhgetabowdit
Posts: 13
New Member

Hi NY Sunshine Thanks for the info. You have a son. sorry about the mistake. I hope he is feeling better. For me when I get sick sometimes Long Island is the place to get help. I lived there most of my life and have family there. I tried to find a doc here but they all seem to give me the run around. I am giving it another try here now so we will see. It is hard when you are so exhausted and it is depressing. Also I know how hard it is to have a sick child so maybe I can show you some support there if you ever need it. my son has been a cancer patient since age 9. He had a brain tumor and had chemo and Radiation. He also had Melanoma after the treatment. I take him to some good doctors here. He had his brain surgery in NY at LIJ. Back to my MRI... In case anyone understands this ...The MRI showed Probable intrasellar arachnoid diverticulum.The central part of the pituatary fossa is filled with cerebrospinal fluid bright signal, the pituatary stalk is posteriorly displaced against the dorsum sellae, and there is a suggestion of downward and lateral displacement of the pituitary parenchyma. Also focal prominence of the superior margin of the pituitary on the on the left is identified.

06/22/2008 08:57 AM
Fuhgetabowdit
Posts: 13
New Member

Hi Herro: Thank you for your help and web site. I know what you mean I think I didn't want to know either and just stayed away. It really helps me to be able to talk to someone. I haven't told anyone about this yet since my family lives far away they don't know. I read you profile and it sounds a lot like me. I have been trying to learn about this all. Over the years I have been taking care of a sick child. I have been depressed and the fatigue is overwhelming. It takes every bit of energy to just do what I need to do around the house and take care of my son. My whole body aches like I was hit by a truck. Did you just have the surgery? What did the MRI say before surgery? Did it show the macroadenoma? What symptoms improved? I am having a new prolactim level tomorrow and some new blood work. The last one was slightly elevated. I still have to find an ENDO here. The MRI showed In case anyone understands this ...Probable intrasellar arachnoid diverticulum.The central part of the pituatary fossa is filled with cerebrospinal fluid bright signal, the pituatary stalk is posteriorly displaced against the dorsum sellae, and there is a suggestion of downward and lateral displacement of the pituitary parenchyma. Also focal prominence of the superior margin or the pituitary on the left is identified.

I still don't know what this means so if anyone can help out there please


06/22/2008 10:37 AM
Fuhgetabowdit
Posts: 13
New Member

Herro;

I read the past posts and figured out this site. My computer kept shutting down the other day. I read the forums and I saw your whole ordeal and story that you told other members. Thank you for sharing it helps everyone. You have really been through a lot. It means a lot to help others who are just starting with the doctors.I see you had the surgery a while back. How are you doing now?


06/23/2008 09:39 PM
herro
herro  
Posts: 204
Member

hi sue! i am not sure what all of what is on your mri report. but if anything is displaced, wouldn't it seem logical that something is displacing it??before surgery my mri's saidmy pit was displaced to the left. you can have "stalk effect" when a tumor interfers with pit normal function. mine showed tumor so we knew it was getting larger. i would ask if there is anything near the optic chiasm. i think the fossa is the whole space around your pit gland but i don't know if it is normal to have "bright" fluid. my neurosurgeon was wonderful, he showed me all mri's and explained everything. my prolactin was only slightly elevated so they think that was from stalk effect. my cortisol was high sometimes. hope this helped.

06/24/2008 05:28 AM
Fuhgetabowdit
Posts: 13
New Member

Hi Herro;

This MRI has a lot of changes from the one from 3 years ago. I have an appointment with the Neuro to discuss it tomorrow. I can't wait to find out more about this. I really feel so much fatigue. I wish that I could go to my sons Neurosurgeon but he only sees children. They operated on his Pineal gland. I also made an appointment with an Endrocrinologist for July 1ast so I hope that I finally find a doctor that does the appropriate tests. I went to one 3 years ago that was a total waste of time. Now at least I am ready to fight and get the tests I need to figure this out. I don't want to keep feling like this if I can help it. Sue

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