AMEN Support http://amensupport.org A Support website for those who have Multiple Endocrine Neoplasia Sun, 12 Feb 2012 18:11:12 +0000 en hourly 1 http://wordpress.org/?v=3.3.1 Feedback Needed http://amensupport.org/2011/10/27/feedback-needed/ http://amensupport.org/2011/10/27/feedback-needed/#comments Thu, 27 Oct 2011 18:40:26 +0000 Kate1988 http://amensupport.org/?p=477 Hello,

I must say that I was very sruprised to find a site that has to deal with MEN’s.  I found out about Medullary cancer in 1988, when I was 22 and it had already spread to the surrounding area.  Had three neck surgeries the first year and a number of others for a total of 10 to this point in time.  I don’t have many glands left!   They thought that I had speradic Medullary until 2003.  This is when I found out about Pheo’s and MEN 2 A.  Who knew!  I thought I was just doing a good job at losing weight :)

Then my heart started feeling funny.   After numerous trips to the doctors with no luck.   I was starting to worry but I just kept going back as I knew there was something wrong.    A few of them wanted to put me on antidepressant meds as they thought I was having anxiety issues.  Finally someone checked my adrenaline levels.   My adrenaline levels were very high and they wanted me to stop doing everything driving, school etc.  I had two weeks left to school and there was no way I was stopping at this point.  As much as they did not want me to, I did finish school and when I was done, I was in the hospital within 48 hours getting my right adrenal gland taken out.

Now to the good part :)

I am at a crossroads and truely don’t know what to do.  This is the first time in almost 24 years that I have not made a nano second decision about surgery.  I have another tumor on my left adrenal gland as well as a few in my liver and more in my neck again.    One doctor seems to think that the adrenal tumor may just be Medullary and that I can wait a bit before having it out.     A second doctor feels that it is a Pheo.    I was suppose to have the adrenal gland out Nov 8th in Boston but I canceled it.   I started reading about Addison’s Disease.    This just does not sound like an easy road to walk down.    I was looking or hoping for some feedback about what it is like to have to deal with Addison’s.  I am suppose to go back for another MRI in Febuary.   Some how I need to come to terms with this and to be able to touch base with someone that has already walked down this road.  It would be a great help to me.

I feel that I am starting to climb down the other side of the hill so to say.  Maybe I am just scared.

Many Thanks,

Kate from NH

]]> http://amensupport.org/2011/10/27/feedback-needed/feed/ 1 Twitter Weekly Updates for 2011-10-09 http://amensupport.org/2011/10/09/twitter-weekly-updates-for-2011-10-09/ http://amensupport.org/2011/10/09/twitter-weekly-updates-for-2011-10-09/#comments Sun, 09 Oct 2011 17:11:00 +0000 Linda http://amensupport.org/2011/10/09/twitter-weekly-updates-for-2011-10-09/
  • 13M ppl are using @GoodSearch. Are you? Join us in helping #charity w @Goodsearch http://t.co/lLFBO53P pls rt #
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    ]]>     http://amensupport.org/2011/10/09/twitter-weekly-updates-for-2011-10-09/feed/ 0     Use @Goodsearch to raise money… http://amensupport.org/2011/10/05/use-goodsearch-to-raise-money/ http://amensupport.org/2011/10/05/use-goodsearch-to-raise-money/#comments Wed, 05 Oct 2011 18:50:04 +0000 Linda http://amensupport.org/2011/10/05/use-goodsearch-to-raise-money/ Use @Goodsearch to raise money for #hagemanfoundation when you search or shop online http://t.co/lLFBO53P pls rt

    ]]>     http://amensupport.org/2011/10/05/use-goodsearch-to-raise-money/feed/ 0     13M ppl are using @GoodSearch…. http://amensupport.org/2011/10/05/13m-ppl-are-using-goodsearch-2/ http://amensupport.org/2011/10/05/13m-ppl-are-using-goodsearch-2/#comments Wed, 05 Oct 2011 14:38:34 +0000 Linda http://amensupport.org/2011/10/05/13m-ppl-are-using-goodsearch-2/ 13M ppl are using @GoodSearch. Are you? Join us in helping #Hageman Foundation w @Goodsearch http://t.co/lLFBO53P pls rt

    ]]>     http://amensupport.org/2011/10/05/13m-ppl-are-using-goodsearch-2/feed/ 0     13M ppl are using @GoodSearch…. http://amensupport.org/2011/10/05/13m-ppl-are-using-goodsearch/ http://amensupport.org/2011/10/05/13m-ppl-are-using-goodsearch/#comments Wed, 05 Oct 2011 14:33:11 +0000 Linda http://amensupport.org/2011/10/05/13m-ppl-are-using-goodsearch/ 13M ppl are using @GoodSearch. Are you? Join us in helping #charity w @Goodsearch http://t.co/lLFBO53P pls rt

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  • I just joined GoodSearch to raise money for my favorite cause when I search or shop online. Help make a difference at http://t.co/EvVRfqnR #

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    ]]>     http://amensupport.org/2011/09/25/twitter-weekly-updates-for-2011-09-25/feed/ 0     I just joined GoodSearch to ra… http://amensupport.org/2011/09/21/i-just-joined-goodsearch-to-ra/ http://amensupport.org/2011/09/21/i-just-joined-goodsearch-to-ra/#comments Wed, 21 Sep 2011 16:03:17 +0000 Linda http://amensupport.org/2011/09/21/i-just-joined-goodsearch-to-ra/ I just joined GoodSearch to raise money for my favorite cause when I search or shop online. Help make a difference at http://t.co/EvVRfqnR

    ]]>     http://amensupport.org/2011/09/21/i-just-joined-goodsearch-to-ra/feed/ 0     Thyroid Stimulating Hormone (TSH) http://amensupport.org/2011/08/16/thyroid-stimulating-hormone-tsh/ http://amensupport.org/2011/08/16/thyroid-stimulating-hormone-tsh/#comments Tue, 16 Aug 2011 14:10:35 +0000 Linda http://amensupport.org/?p=361 TSH, as described by Steadman’s Medical Dictionary for the Health Professions and Nursing (1) pg. 1468, is a glycoprotein hormone produced by the anterior lobe of the hypophysis that stimulates the growth and function of the thyroid;  it also is used as a diagnostic test to differentiate primary and secondary hypothyroidism.  Syn. thyroid-stimulating hormone,  thyrotrophin.  This is the simple explanation for TSH, I will work on an article, to be posted on this website,  in the near future.

    Linda Hageman, RN

    ]]>     http://amensupport.org/2011/08/16/thyroid-stimulating-hormone-tsh/feed/ 0     New to MEN 1 http://amensupport.org/2011/07/22/new-to-men-1/ http://amensupport.org/2011/07/22/new-to-men-1/#comments Fri, 22 Jul 2011 16:05:29 +0000 Smiles4U http://amensupport.org/?p=322 It appears I may be the first one to post to this site!  Wow!  I was clinically diagnosed with MEN 1 in 2010 and wanted to share my journey, learn more about MEN 1, and both receive and provide support to others.  There is no doubt that there is strength in numbers and there is much to be learned from each individual.  I am going to hold off for now and wait until others join this fabulous site!

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