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Ankylosing Spondylitis

Posted by on Feb. 24, 2014 at 6:47 PM
  • 30 Replies

 I have recently been diagnosed with this... How many other mom's have this?

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by on Feb. 24, 2014 at 6:47 PM
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Replies (1-10):
Waterswaves
by on Feb. 24, 2014 at 7:35 PM

I don't have this but I know several people who do. I have Ehlers Danlos Syndrome and people with EDS have a high likelihood of having this too. You might want to look up the symtpoms of EDS just in case. Most doctors know little about EDS and often miss it. I don't think it's as rare as many doctors think, just rarely diagnosed. EDS is a genetic connective tissue disorder that causes the body to make bad collagen, which is basically the "glue" that holds us together. It's estimated that over 90 to 95 percent of EDS cases are undiagnosed. EDSers dot com is a good site and so is EDNF dot org, for anyone interested in learning more about EDS. I may not have AS but if you need support, I'm here and I;m sure there are support groups online that I could help you find. hugs and best wishes

LeapBaby123
by Kathleen on Feb. 24, 2014 at 9:12 PM
I've never even heard if it. What is it, if you don't mind me asking?
LML1
by Kristy on Feb. 24, 2014 at 10:34 PM

 Thanks, I'll check it out. My symptoms didn't start until after I had my daughter... which was four years ago. That's how long it took for them to figure this out

Quoting Waterswaves:

I don't have this but I know several people who do. I have Ehlers Danlos Syndrome and people with EDS have a high likelihood of having this too. You might want to look up the symtpoms of EDS just in case. Most doctors know little about EDS and often miss it. I don't think it's as rare as many doctors think, just rarely diagnosed. EDS is a genetic connective tissue disorder that causes the body to make bad collagen, which is basically the "glue" that holds us together. It's estimated that over 90 to 95 percent of EDS cases are undiagnosed. EDSers dot com is a good site and so is EDNF dot org, for anyone interested in learning more about EDS. I may not have AS but if you need support, I'm here and I;m sure there are support groups online that I could help you find. hugs and best wishes

 

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Noni2319
by Chrissy on Feb. 24, 2014 at 10:38 PM
I haven't heard of it. But I hope you get some good info and support.
LML1
by Kristy on Feb. 24, 2014 at 10:43 PM

 Honestly, I don't know much about this. However, there is no cure. My spine will eventually fuse itself together and I'm in a lot of pain. Oo I'm also allergic to sulfa and asprin... those are the two medications doctors use to treat this. I'm trying to stay positive about this whole thing... but it's hard.

Quoting LeapBaby123: I've never even heard if it. What is it, if you don't mind me asking?

 

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LeapBaby123
by Kathleen on Feb. 25, 2014 at 1:21 AM
Oh my, I'm sorry to hear that. I will keep you in my thoughts.

Quoting LML1:

 Honestly, I don't know much about this. However, there is no cure. My spine will eventually fuse itself together and I'm in a lot of pain. Oo I'm also allergic to sulfa and asprin... those are the two medications doctors use to treat this. I'm trying to stay positive about this whole thing... but it's hard.


Quoting LeapBaby123: I've never even heard if it. What is it, if you don't mind me asking?

 

fire86
by New Member on Feb. 25, 2014 at 1:44 AM

I do not have AS but I have Osteo Arthritis which is in the same family as AS I have a lot of the same symptoms as someone with AS and my spine is alrady fused. I take mobic,hydrocodone and a muscle relaxer once a day and it helps me alot. I also do water arobics which also helps me tremendously.

Waterswaves
by on Feb. 25, 2014 at 10:37 AM
Quoting LML1:

 Thanks, I'll check it out. My symptoms didn't start until after I had my daughter... which was four years ago. That's how long it took for them to figure this out

Quoting Waterswaves:

I don't have this but I know several people who do. I have Ehlers Danlos Syndrome and people with EDS have a high likelihood of having this too. You might want to look up the symtpoms of EDS just in case. Most doctors know little about EDS and often miss it. I don't think it's as rare as many doctors think, just rarely diagnosed. EDS is a genetic connective tissue disorder that causes the body to make bad collagen, which is basically the "glue" that holds us together. It's estimated that over 90 to 95 percent of EDS cases are undiagnosed. EDSers dot com is a good site and so is EDNF dot org, for anyone interested in learning more about EDS. I may not have AS but if you need support, I'm here and I;m sure there are support groups online that I could help you find. hugs and best wishes

 Yw It does seem to take them a long time to find things that they don't consider common. I was born with EDS but they didn't figure it out until I was 46. My Dad has it and didn't know. There are so many possible symptoms that can also be other things. I have early osteoarthritis, like another commenter. The OA is connected to the Ehlers Danlos for me. My collagen is so bad in some places that my joints dislocate and go back in on their own. I have the hypermobile type. My family was told I was "just double jointed" but that was actually a symptom of the EDS. www.EDSers.com and www.ednf.org are good sites. (Does anyone know how to make those linky please?) The wikipedia page for EDS has a decent list of symptoms that's easy to read. My jaw pops but I've never been diagnosed with TMJ. which can be a symptom. I have a high palate, crowded teeth, blue sclerae (the whites of my eyes have a blue tint). My skin is soft and smooth so I look a lot younger than I am, that's due to the collagen issue I have. My joints pop, snap and crack more than most people my age. I have a swan neck deformity on one finger so far. I have lots of pain, fatigue, and many more symptoms I'm forgetting. Hope this helps explain it a little more. The human body has a lot of collagen and if it's not strong it can cause a ton of issues with many symptoms. That reminds me, I have GERD, IBS, polycystic ovary syndrome, and sleep apnea too. No two people with EDS are exactly alike though. I may have dysautonomia (problems with blood flow in the body that can cause someone to pass out www.dinet.org is a good resource to check for info on that and POTS, a form of dysautonomia. I do have livedo reticularis too. That's a lacy pattern under the skin due to the blood flow issues. Hope this helps explain EDS a little more.


supercarp
by on Feb. 25, 2014 at 11:14 AM

There are things you can do to slow the progression of the disease. Fortunately you are female. Did your doctor recommend a low carb diet?

 

Blakesmommy427
by New Member on Feb. 25, 2014 at 11:19 AM

 My Grand Father has it.  He has lost his colon because of it plus he has a ton of other problems do to the disease.  He was diagnosed at age 40 and is now 74.

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