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#1
Jul 31, 2008, 01:10 AM
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I was wondering if you knew any more on my diagonosis? I was diaginosed with a disease called "MACULAR SYSTEMIC AMYLOIDODSIS" I am kinda depressed and trying to deal with it best I can and know how. But I found out it can be hereidtary and I dont wanna pass it on to my kids.Also if there is anmore treatments or cures for it? I have been diagnosed with several different things but now I found out I dont have any of those and that they all are symptoms of this disease. But I dont know how I even got it.I asked my family if anyone has it and they say no. Can you help me to accept and know my conditon please?!?!?!?!
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I am a Happily married mother of two. I am currently on here because of some health problems I have just been diagonosed with but been having symptoms for years.I just have been trying to dealing with living with a disease for the rest of my life and trying to cope and deal. |
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#2
Jul 31, 2008, 01:31 AM
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(((((((((((((ProudMommaXTwo))))))))))))))
Welcome to PC. Now, nobody here is a doctor... but I did some searching on Google, so I hope this can help you learn a bit more about your disorder? I'd suggest talking to your doctor though as well.  http://www.amyloidosissupport.com/ http://dermnetnz.org/systemic/amyloidosis.html http://www.wrongdiagnosis.com/medica...myloidosis.htm
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#3
Jul 31, 2008, 04:08 AM
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I think KathyM, one of our members here, has a form of Amyloidosis. I will give her a PM and ask her to look at this thread.
Take care. |
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#4
Jul 31, 2008, 09:24 AM
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He who angers you controls you! |
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#5
Jul 31, 2008, 11:49 AM
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((ProudMomma))
I don't think you have to worry about your children. Your type of amyloidosis does not fall into the category of familial or hereditary types of amyloidosis. From what I understand, I believe your type was caused by a secondary illness which triggered the amyloidosis. I have never seen your type connected to hereditary amyloidosis. I have the hereditary systemic type, and I've been living with it for 12 years now. My mother and grandmother suffered from it as well, and my son has a 50/50 shot of inheriting this illness. My type also effects the eyes in the form of lattice corneal dystrophy. Doctors thought I only had a few years left of eyesight, but obviously I can still see. I don't know how else to say this, but I suspect you already know. There is no cure or treatment specific to our illness - mine being hereditary, yours being secondary. We're outside of the box because we don't qualify for stem cell rescue or chemotherapy, like the primary type. The only treatment available is an attempt to treat the symptoms in order to make you more comfortable. However, I haven't been keeping up-to-date recently on other types beside my own, so I could be wrong about treatment possibilities for you. Here's a link to some good people in the know when it comes to amyloidosis. http://www.amyloidosisresearchfoundation.org/ I hope you'll be able to find relief. |
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#6
Jul 31, 2008, 10:50 PM
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Thank you KathyM for stopping by, and a big hug for both of you.....
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This is an old thread. You probably should not post your reply to it, as the original poster is unlikely to see it.|
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