I hope you all haven't gotten discouraged and left. I have MEN and have been learning about my disease in pieces for almost 20 years now. We didn't actually know at first that this is what I had - it was kind of figured out after I kept having endocrine problems. Right now I'm going through another flare up and testing so that we can get my "fine balance rebalanced." I'm also a bit worried that I have a new set of tumors popping up.
I have had my parathyroids removed and a small implant put in my chest. That was two surgeries. I have had my adrenals removed due to the Cushings portion of the disease. Most of my thyroid has been removed along with the parathyroids and also my thymus. I have a small brain tumor which is supposed to be connected to the disease but it is not in my pituitary although next to it.
What else? I have a great local doctor who keeps me in fairly good shape except the past couple of years have been a slow downhill til I hit my latest crisis. I thoroughly believe in herbs etc because I think that these are what have kept me doing much better than many doctors think I should be doing.
I would love to be able to visit with other people who have this disease. I know that I have a rare disease which can be frustrating. One of the frustrations is that I have never met anyone with it. It is also a rare form of it. My endocrinologist says that it's not a form that has been seen before. The good part of that is that I haven't had any cancer connected to it.
I am from England and have multile endocrine neoplasia type 2A. I have never met anyone else with it, nor have I met anyone as skinny as me, all other problems seem to be weight gain rather than loss. No other family members with it, so if there is anyone out there like me, e mail me please!!!
rhnewman Registered User
Posts: 1
(3/13/02 12:13 am) Reply
Re: Introduce Yourself
I have MEN that I inherited from my father. Most of his brother and sister had it also. Family is full of it. I'm sure it came from his mother. I was not raised with my father and didn't meet him until I was 20 years old. Then was told about this disorder, so was checked. Quess what I had it too. My two children have not yet showed signs of it.
Re: Introduce Yourself
Hello! My husband was diagnosed with MEN1 on March 15, 2000. There are 15 other members in his family who also have the disease. He was also diagnosed with Thyroid Cancer as a result. If you are interested you can read our journal at www.geocities.com/the_cas...urnal.html It details what we have been through the past few years since the diagnosis. I'm really glad there is a message board for this disease!
Rebekah, help meet to James and mama to Katie (SD~6/22/89), Kayla (SD~9/13/90), Jacob (2/3/96), James Jr. (1/20/99), Hannah (2/4/01) and 3 little ^i^s waiting for their mama in Heaven. Yahoo IM: jrjnjcastle ~The Castleberry Homepage~
men2a
Hello Amanda. I too have men2a and I am the only one in the family that has it, I am the youngest of 7. It has been a nightmare trying to find anyone with the same thing. I had pheos removed at 16 medullary thyroid cancer at 32 removed and now it has moved to my liver. I think I waited to long to find out that I had men2a. If I had got the thyroid out before it grew to big it might not have moved to my liver. I live it the United States, North eastern Pennsylvania. Feel free to e-mail me at glenxbox@yahoo.com Put men2a in the subject area so I know not to delete it. Glen
multilpe endocrine disorders
Where do you go for a straight answer? Each time one system acts up , they just say take this and lets wait and see. I have a pineal cyst which is growing, but they claim it is not involved with the endocrine disorders which have gone bad this last year. If anyone has any suggestions , please let me know.
I have hypothyroid, low cortisol, low ACTH, Reaactive hypogylcemia, irregular menstral cycles, weight gain, fatigue,
chrissyjordan
Unregistered User
(6/6/02 6:42 pm) Reply
men1
Hi! My name is chrissy and I've known I had men1 since I was 15. I had my parathroids removed in 1993. I had a parathroid transplant in my left forearm in 1994. I had kidney stones in 1994. I had my pancres,gallbladder,duodenum removed in 2000. I have a pituitary tumor that they are watching now?! I decided not to have children so in 2001 I had my tubes tied. I was going to nursing school before I got the pancreas tumors. I had to quit. Since the surgery, I have been so tired. Does anyone else feel like I do? I am only 25 years old and my body feels like it is at least in it's 80's. I am the sixth generation that has the disease. My aunt and uncle died in their 30's from pancreas cancer.
ck101msncom
Unregistered User
(7/6/02 5:10 pm) Reply
MEN1
Hi. My name is Christine and I found out I had MEN1 last July when the doctor's found a tumor in my pancreas. It was a glugonoma. I've had my parathyroids removed and one implanted in my arm. I'm 30. My email is cballar1@email.usps.gov. Please email me and let me know how you are.
PatriciaRandleWood
Unregistered User
(7/29/02 3:29 am) Reply
Wood
What is your fathers name? I am in the same situation. My fathers name is Robert Wood. He has a brother Jerry. I found out about it nine years ago. I have MENS2a. What do you have?
newbie
hello glad I found you. My family and I are searching for information on Men1. My grandfather died from it and my brother is being tested as we speak.
Hi Everyone,
Thank you for starting this board-I was wondering where I could find others with MEN. My brother just found out that he has MEN I. When I looked up information on this, I thought I might have this too. I've had ulcer surgery 9 years ago and a reoccurance of ulcers 2 months ago. It was only after the 2nd time that the doctors were aggressive about finding out what's wrong. I was diagnosed with hyperparathyroidism and hyperthyroidism, and now I'm waiting for my doctor to tell me if she wants me to take the genetic test for MEN I. It looks like everyone exhibits various symptoms in various degrees, respective of the type of MEN.
Lynn
Phyllis Registered User
Posts: 1
(10/6/02 6:06 pm) Reply
MEN
So glad to have found this site. This genetic disorder is in my family (MEN 1) and have had 1 sister expire from Zollinger-Ellinger. I have had a large islet cell insulinoma removed followed several years later by a sub-total pancreatectomy. My other sister has had her parathyroids removed twice and 2 nieces thus far also have had parathyroid excisions.
Phyllis
clare Registered User
Posts: 1
(1/9/03 6:52 am) Reply
MEN 1
Hi there!
My name is Clare (another person from England) and my husband Nick was diagnosed with MEN 1 last year, following the removal of 2 parathyroid glands (only 2 were removed as they didn't realsie it was MEN 1). He is now waiting to find out about 3 glucagonomas in his pancreas and is currently taking the drug Sandostatin (Octreotide Acetate) to try and reduce his symptoms and give him a better quality of life. He is only 25 and we are trying to cope with this as best we can. If anyone wants to contact us please feel free at: claregoldsmith@hotmail.com Any help or support would be much appreciated.
Men1
Hi there- I'm in this boat too! just kidding. I also inherited this from my Dad. Although my Dad had Zollinger-Ellison. It's abbreviated ZE if you've not heard of it. I'd like to coorespond with you here or my e-mail is rosiedutton@elp.rr.com.
yesor Registered User
Posts: 1
(1/18/03 10:46 pm) Reply
Re: MEN
Hi Phyllis and all who deal with MEN1,
-My name is Rosey and I'm new to the internet so please excuse me if I flub up. My e-mail address is[mail]rosiedutton@elp.rr.com[/mail] and I'm really glad to know there's others like me for mutual support and more. My father and uncle died from Zollinger-Ellison (ZE) 30 years ago. In 1972 even the military doctors were stumped. The story was that females were carriers only but males only would exhibit symptoms. Anyhow, Soon after their deaths; the pain of it drove my Grandmother to suicide. I was 6. Then when I was around 12 I had an excruciating pain and my kidney was swelled. The Drs. had me checked for the disease and said "she doesn't have it". Lastly, I was suffering from hypoglycemia year before last and we thought itwas reaccuring sun stroke.
I was diagnosed with MEN1in 11/01. In 1/02 my pancreas tumors were removed. It went really well even though my spleen was taken also. In 9/02(last year)2 of my parathyroids were removed. The Dr. said he removed all he could find and thought he had removed all the damaged cells. Unfortunately, my calcium rose steadily after the surgury. I 've been rescanned and I see the internal medicine Dr. wednesday 1/21/03 for the interpretation.
Let me know how you're doing,
Rosey
abp3151yahoocom
Unregistered User
(2/19/03 11:33 am) Reply
New Member
Hi. My husband was diagnosed with MENI in 1990. He was 39. Since then he has had 3 parathyroids removed and 95% of his pancreas was removed due to insulinomas. While he should be diabetic from the loss of so much of his pancreas, he is actually hyperglycemic to the point of having had his blood sugar levels drop into the upper 20's (27 to be exact). He also has a tumor on his pituitary gland that has not changed size for the last few years so they are leaving alone for now.
The problem is my husband appears to have Ellison-Zollinger (?) Syndrome. He is over-producing gastrin and is developing ulcers as a result. He is on Previcid, but it does not seem to help. He gets flare-ups of severe diarrhea every couple of weeks that can last for days or even weeks at a time. The period between flare-ups seems to be getting shorter.
Can anyone give me any advice about this? What can I expect? Thank you.
men
I have been having sporadic endocrine problems for almost 2 years but haven't been able to get diagnosed, but have all of the symptoms of MEN2. I was really skinny, but just in the past month have gained weight. I have neuromas on my eyes, tongue and intestines. But I can't find a doctor who knows much about it. Plus everytime I get a test it doesn't show anything! Does anyone know of a doctor who knows something about this? My brother has most of the symptoms also, he was just diagnosed with diabetes and has gained alot of weight. I have found if you don't eat sugar and eat brown rice, you feel a lot better!
Soenar Registered User
Posts: 1
(4/25/03 6:59 pm) Reply
Re: Introduce Yourself
I have not yet been diagnosed with MEN but have several family members who have. I have been diagnosed with Parathyroid Disease. This is new to me personnaly but not my family. One brother died at age 14 in 1961 from a malignant pituitary tumor that he apparently had since birth, my father and all of his siblings have has some form of MEN or ZE, my sister has MEN1, several cousins and second cousins have MEN1 and 2. I turned 50 last December and my doctor tells me that I have had slightly elevated blood calcium for the past 3-4 years. This is when I started looking into my family history and found that all of my aunts and uncles on my father's side had parathyroid problems/surgey and many cousins as well. I also have been diagnosed in the past with hypoglycemia (highschool years). Two years ago I requested a bone density and found out I have Osteoporosis and Osteopenia. I have suffered from fatigue and muscle weekness in my legs for several years without any explanation. Every night when I get into bed my feet cramp. My memory problems were attributed getting older. My increase in headaches has been attributed to my migraines. When I started looking into the Parathyroid issues I found a lot of answers. I was directed to this site and found more. I am having another bone density this Monday 04/28. If it shows that the Fosomax that I have been taking for two years has not been of significant benefit, my doctor will recommend that I have the Parathyroid surgery. If it shows benefit to my bones she will not recommend the surgery at this time as she says I am a-symtomatic at this time with the Parathyroid Disease. She says that if I have the surgery now I still have a 50% chance of having surgery again later with other problems so I should wait and see how things develop.
It would be helpful if anyone else has thoughts regarding this "a-symtomatic" issue. It seems to me that if I am having these several problems (fatigue, headaches, Osteoporisis, Osteopenia, weakness, muscle cramping) that I am not "a-symtomatic". I would appreciate any thoughts anyone might have on the pros and cons of when to have the parathyroid surgery. Thanks for this forum. I can be reached at soenar@aol.com
jadennis85
Unregistered User
(6/16/03 8:49 pm) Reply
Hello
Was diagnosed with MEN1 in 2000, currently I have a prolactioma and tumors on my pancreas, which cause ulcers. I understand the disease on a clinical level, but have hundreds of questions about living with this. I am 25, but look 15ish. I'm 5'5" but only weigh 105 lbs on a good day - can NOT gain weight. Does anyone know if this is normal for people with MEN1? No one in my family show signs of the disease, and refuse to be tested. Only treatment I have received was bromocriptine to shrink my pituitary tumor and prescriptions to heal and prevent future tumors. Lastly, does anyone know how to get health insurance? No one will insure me because of the MEN1. Thank you for the support! My email is jadennis85@hotmail.com
Wife with MEN1
My wife was diagnosed a couple of years ago with MEN1. I'm trying to understand this disease, as I am really scared for her. Are there any other spouses out there who have any advice. She is really scared understandibly so, but for now she is mostly stable, but really worried about her future, especially after reading the posts here. Is anybody from KY? I just wish she could find someone to talk with who understands this disease, and can offer her some support. I try, but I don't feel I can do anything other than just being here for her when she needs to cry. She's afraid that she won't be able to have children, which is a huge deal for us, because we want a child of our own, but I don't know how well either of us would take it if we tried, and found out we couldn't because of this stuff. Thanks in advance, and God bless.
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