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0 Posts in 0 Topics Made by 66 Members. Latest Member: WanbanOpto
Latest Post by Guest on January 1, 1970, 00:00 |
Mingle Forum by cartpauj
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tropicalbeachgirl
I happen to have come across this website earlier today and was thrilled! I was diagnosed with MEN type 1 in late 2001 after the death of my mother. My mother had this disease as did her father. I also have several siblings that have inherited it as well. To date I have had surgery to remove a Pituitary tumor and most of my Parathyroid glands. I am currently under the medical care of a wonderful Endocrinologist at the Mayo Clinic in Rochester, Minnesota for observation of my Pancreatic tumors. I would love to connect with anyone regarding MEN type 1.
Linda
Welcome tropicalbeachgirl, I also go to the Mayo Clinic for my MEN Healthcare. i can assure you that they are very knowledgable about MEN. Please keep us updated on your progress. We are going to have a MEN Seminar at Mayo Clinic this year. I am sorry this response is so delayed. Please feel free to contact me personally Linda@hagemanfoundation.org. We are in the process of a new website design any topics or information you would think would be inportant for this site please let us know.
tropicalbeachgirl
Linda – thanks for the response – my name is Kerry and I live in Minnesota so getting to Mayo is relatively easy for me, which I am grateful for. Please let me know when the seminar will be, I would love to attend. I will be there this summer for my annual check up. Luckily, even though I have a few pancreatic tumors, my blood sugars and gastric levels still remain low. I did send you an e-mail as well with some of my other background information. I know what to expect with this disease because my mother had it, so nothing is surprising, but any new information on treatments would be good to have. Thanks again for your time and information.
Linda
MARK HENDERSON’S LEGACY PAGE
Please express your thought’s and prayer’s to Mark’s Family. Several months ago Mark entrusted his WhippleLife site to me. We have incorporated WhippleLife under our nonprofit status so it will live on. I thank everyone for their kind words and support on WhippleLife. We are working on Mark Henderson’s Legacy Page and will remember him and his incredible spirit and writing talents. I have several of Mark’s incredible writings and will be posting them one at a time on this page. Please help me to show Mark’s wife Carin and Family how much he is appreciated for his WhippleLife Site work, that brought many of us together as a Whipple Community.
Thank-You for helping me keep Mark’s Spirit live on and on.
Linda
Smiles4U
Seems I can’t log on to this site very easily. Always end up at the WordPress blank page and nothing happens. Are any others having this difficulty?
Kristen Foster
Yes, I am having the same issue. How do we resolve this?
Smiles4U
I just joined this site yesterday because I was clinically diagnosed with MEN 1 in 2010. It has been 1 year as of 7/26 since I underwent pituitary surgery for an ACTH-producing tumor (i.e. Cushing’s Disease) with parathyroid surgery 90 days after that. All four parathyroids were hypercellular. There is no one in my immediate or extended family that has been diagnosed with MEN 1. I am concerned about my 43-year-old sister who lives in another state. She seems to have many of the same Cushing’s symptoms and is now 40 lbs. overweight. Her PCP does not seem to understand the fact that this could be hereditary and has not referred her to an endocrinologist. I have researched endocrinologists in San Diego, CA and thought about having her see Dr. Steven Edelman with UCSD. Does anyone know of an endocrinologist familiar with MEN 1 and/or Cushing’s disease in San Diego, CA? I would greatly appreciate any guidance here because I do not want to have my sister suffer the 3 years I did to find the right doctor. Thanks in advance!
leigh
Hi, my name is Leigh and writing from South Africa. I am 33 years old now and was diagnosed with MEN2B in 1992. At the time i had a total thyroidectomy as had MTC. At the time they were not sure if they had damaged my parathyroids which were replanted back into the neck. Haven’t seemed to have any problems with them. The following year i had a bilateral adrenalectomy taking out both adrenal glands. Seemed to be stable on my meds, cortisones and thyroid replacment. I was just wondering if you could let me know which tests i should be having annually to check all is ok. I do the usual blood test for thyroid levels and a calcitonin test. Also have the VMA urine tests. I also used to have the pentagastrin test but that was discontinued and could not seem to be able to get it done in south Africa anymore. Are there any scans i should be having or any other tests you know of. Just want to be assured that i am having all the correct tests. I do the bone scan annually as have osteoporosis. Linda could you explain what Tetany is about as i see you have been experiencing it. I have had a few times where i have passed out or got very lightheaded and hot and felt like i was about to pass out. This did occur one time after i was dehydrated after having a bad stomach bug and ended up in hospital on drips. Also does anyone suffer with peripheral neuritis of the feet. This being that i have very sore feet most of the time, caused by nerve damage. Burning and tingling feet all the time. I am on Lyrica to help with the pain. Thanks for listening!!
Linda
Hi Lee,
If you will provide your mailing address to linda@hagemanfoundation.org I will send you out a packet, then you will be able to copy the information to give to others.
Linda Hageman, RN
pabell59
Here is an article about Tetany and Hyperthyroidism:
http://www.nlm.nih.gov/medlineplus/ency/article/000385.htm
Linda Hageman, RN
Article about TETANY written and posted on this website. Feel free to make copies for family, friends and the medical professionals you see. I keep a copy in my purse and have used it in the ER. Hope this helps Linda H
Linda
For all of the MENers from South Africa I have introduced a Physician from South Africa, that has MEN, to a Physician here in the USA. He will get the most up to date medical information from the USA. We are also on Facebook.com go to Facebook and search for MEN we are American Multiple Endocrine Neoplasia Support; However we work with any requests from around the world. We have recently posted new information on the website with many links that will give you medical information on MEN. I promise you will be able to understand the medical information and the same goes as far as the links are concerned also. Linda Hageman, RN
cal
what seminar?
Linda Hageman, RN
There is a flyer up under EVENTS, however the MEN seminar is starting a day earlier, Wed.-Fri. We are putting the finishing touches on the program. We have experts on MEN from several medical institutes. Dr. Stephen Marx from National Institute of Health, Dr. Maria Luisa Brandi, from Italy, Dr Eren Berber, from Cleveland Clinic, and many more. It is a 3 day conference, including a day on surgical procedures that people with MEN often need, including the Whipple procedure.
Hope to see you there.
Linda Hageman, RN
Linda
Seminar Cancelled due to lack of participation; however we are talking to several major medical centers around the US and may be partnering with the medical systems to present one day Seminars on Men’s and the Whipple Procedure. Planning on possibility doing Seminar nationwide at Mayo Clinic if we get enough support to have a bigger Seminar. Any suggestions are welcomed. Thanks always for your support.
arvane
Please let me know if you guys will have another seminar soon. I would like to have my husband and family involved as well. Thanks for the info.
pabell59
We have already scheduled a seminar in Rochester, MN at Mayo Clinic June 22, 2012. Other seminars are in the works. Is there a particular place you would like to see a seminar?
arvane
I really want to attend. I was just recently diagnosed with MEN-1 and want to know more about the symptoms too
pabell59
Is anyone else attending the seminar in Rochester, MN near Mayo Clinic?