Looking for People with S.O.D./De Moisier syndrome

Category: Health and Wellness

Post 1 by marrahdarrah (Generic Zoner) on Wednesday, 23-Aug-2006 23:01:57

I have Septo Optic Dysplasia, and I am wondering who else on the Zone has it. It is also called De Moisier syndrome. I would like some information on the disease as well because I am having health problems and I am wondering if this is part of the disorder. If you can help, or if you have SOD, contact me here or email me at d_newhope_777@yahoo.com. Put SOD in the subject line so I don't delete your messages as spam. Thanks.

Post 2 by ezziejc (The Bathroom Skyper!) on Saturday, 02-Sep-2006 16:54:46

I have S.O.D. too, but I only have blindness and loss of sense of smell. I have light perception in one eye and my ears play up too. I also now someone else who is my best friend who has it but she has lots more problems too. I'm sorry I don't know anything more, but it'd be interesting to see what other people think. By the way, it is sometimes called Optic Nerve Hyperplasia or something to if that's any help.

Post 3 by NarnaNeana (Veteran Zoner) on Saturday, 02-Sep-2006 19:27:54

I also have SOD. It's a complex condition that can affect different people in different ways. Personally, I am growth hormone deficient, although I'm not sure if SOD is anything to do with this. I have pituitary gland problems too, and get tired more quickly and easily than most people, especially if I do too much walking (mostly up and down stairs or hills). I also have weakened muscles, lack energy and gain weight very easily as a result, as far as I am aware, of SOD. Separately, I also have an underactive thyroid gland.

If you are having additional health problems and you are concerned that they may be related, then it would certainly be worth mentioning them either to your GP, or your consultant, when you see them.

Post 4 by Blue Velvet (I've got the platinum golden silver bronze poster award.) on Sunday, 03-Sep-2006 1:31:59

Also you could visit sites such as webmd.com to do some research on your own. Sounds like a very complicated condition.

Post 5 by NarnaNeana (Veteran Zoner) on Sunday, 03-Sep-2006 13:27:21

I've also just typed Septo-optic dysplasia into www.google.co.uk and there are loads of sites there with information, one of which is www.pituitary.og

Post 6 by audioadict (I'm going for the prolific poster awards!) on Tuesday, 07-Aug-2007 5:51:43

I also have septo optic displasia. I'm totally blind, have no sense of smell, growth hormone deficient, and have never had a period. I also lack energy, but I don't know if that's a symptom.

Post 7 by Chris N (I just keep on posting!) on Tuesday, 07-Aug-2007 10:54:37

I wonder if not having a period could be considered a blessing in disguise.

Post 8 by audioadict (I'm going for the prolific poster awards!) on Thursday, 16-Aug-2007 23:04:33

Well, that's thinking about it with a positive outlook. I've never thought of not having a period that way.

Post 9 by ezziejc (The Bathroom Skyper!) on Tuesday, 04-Sep-2007 23:56:47

I had a couple, years ago, but they've bugered ff now. Thinking about that list of symptoms up there, since I posted last, I have also had muscle difficulty, again, mostly when walking As forperiods, yeah its very much a blessing - no mess to clean up or icky feeling that makes you just wanna die in a corner.

Post 10 by audioadict (I'm going for the prolific poster awards!) on Friday, 21-Sep-2007 0:15:43

I even found out that people with sod have problems with the adrenal gland. For me, I don't think I have enough sodium in the blood. That's why I crave water, which is a symptom.

Post 11 by ezziejc (The Bathroom Skyper!) on Tuesday, 25-Sep-2007 20:01:59

rer: my previous post about muscle difficulty. Anyone else noticed this? I found a link on the internet - sorry I don't have it here that says SOD is linked to low muscle tone.
I've given up expecting anything to get better with that so i've bought a walking stick.

I also think I have asthma, but apparently my lungs are clear. What do people think of that?

Post 12 by audioadict (I'm going for the prolific poster awards!) on Thursday, 27-Sep-2007 23:01:55

Well, I don't think asthma and sod are linked together because I can breathe just fine.

Post 13 by Reyami (I've broken five thousand! any more awards going?) on Friday, 28-Sep-2007 0:15:09

As with any syndrome, symptoms vary with each person. what you may not have, someone else might.

Post 14 by audioadict (I'm going for the prolific poster awards!) on Friday, 28-Sep-2007 11:37:26

Well, that's true.