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Re: Son newly diagnosed #2476 01/23/05 03:06 AM
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sandra Offline
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Hi again, Mom Advocate, You are getting bombarded with information!! I am sure you are both thrilled and overwhelmed! One piece of advice that has been helpful to me is...this disease manifests in MANY different ways. Yes, lots of things are related, but the most important thing you and your son need to do is make him feel better. Information is power, but much of it is beyond your control. I took a break from all this reading after a while because I just had too much to process. Take your time to absorb it all--don't feel like you have to do it all overnight. A year later, things look much better for Alex than they seemed a year ago. I do thank everyone here though, because the support is one of the most helpful things of all. I hope I don't sound ungrateful or unsupportive...I just remember those early days being overwhelming. Take your time!

Re: Son newly diagnosed #2477 01/24/05 05:37 PM
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keenaj Offline
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Mom Advocate: My son has had problems since he was learning to walk (he is 12) but was only diagnosed a couple of years ago. Recently he has had two separate episodes of something similar to what you have described. He felt like his heart was beating fast and hard. It bothered him so much that he wouldn't go to school or play. After the second episode the doctor did an EKG and it showed "sinus arrythmia". The doc said it was nothing to be concerned about, that a lot of young athletes had this problem. I am still concerned and he is by far a "young athlete". Prior to having these episodes he has had where he said his chest hurt and was "heavy". He also has unexplained aches and pains. We just deal with it the best we can and take it day by day. I have mentioned this before but our biggest problem is his teachers who can't understand that he can be great one day and not able to go to school the next. Hang in there, you're not alone!

Re: Son newly diagnosed #2478 01/26/05 02:55 AM
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waynec Offline
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Regards to sneezing.

I too have had tremendis pain while sneezing. Because my AS was inflamed, wich for me was in my spine, I dreaded sneezing. but like you mentioned, this was not always. but always when my spine was inflamed with my AS.

good luck

Re: Son newly diagnosed #2479 01/26/05 02:39 PM
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colleen_minnesota Offline
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When I feel a sneeze coming on, I brace myself, whether I'm in the midst of a flare up or not. I usually lean forward, and hang on to the counter, table or back of a chair. Better than that, though, is to squat down, curving my spine as much as I can before it happens. Sometimes, they come on so fast, though, that I don't have the time to brace myself for it, and the pain is so bad it literally brings my legs out from under me! It's like someone stabs me in the lower back and then runs the knife down my legs! Talk about painful!

It's funny, even some of the things that seem like 'little irritations' when I am going through them seem to be validated as real through this board... It just reinforces the belief that I'm not alone!

Thanks, all!
Colleen


Re: Son newly diagnosed #2480 01/28/05 01:52 AM
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waynec Offline
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Yep, Colleen what you described, me too.
braceing mysself bending over and preferably hang on to something because this next sneeze might drop me to the floor.

Yep, for a long time I thought I was very much unique.

best wishes
waynec :p

Re: Son newly diagnosed #2481 01/28/05 06:19 AM
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Mom Advocate Offline OP
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Hmmm. Finally, others with a similar symptom as my son - sneezing and then experiencing horrendous pain. His pain is in his chest - like every fiber of his soul is exploding throughout his chest and sometimes down his arms. Does any one else experience that? Some have mentioned pain in the back and legs after sneezing. But Taylor doesn't have that. But he experiences about 3 minutes of debilitating pain that he thinks he won't be able to take. It's scarey.
Mom Advocate

Re: Son newly diagnosed #2482 01/29/05 03:11 PM
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DarrenNelson Offline
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Hi Mom Advocate!

You are VERY lucky...I say that because you have discovered your son's AS early. By the time I was finally diagnosed, my pelvis was fused all the way up through my lower 5 vertebrae as well as some between my ribs...

AS attacks the cartilidge between your ribs just as it does your discs in the back so that might explain some of the inflammation in your son's chest.

I only have one piece of advice. Look into ENBREL or any other TNF blocker. While anti-inflamatories will relive your sons pain, they will not stop the progressiosn of the disease. Even with exercise, and anti-inflammatories, he will still eventually end up fused:( After years of athletics and a ton of ibuprofen, it still did not stop the inevitable for me.

Enbrel will slow down or stop the progression of the disease. I am on it now and feel incredible but I will never be able to unfuse my body. Fortunately you have the opportunity to keep his disease from progressing and buy him some flexibility.

Those are my thoughts anyway. Good Luck!!!!


Darren in Dallas

Suffered for 18 years
Diagnosed 8/24/04
"Better to fight the demon you know than chase the one you don't!"
Re: Son newly diagnosed #2483 01/30/05 12:21 AM
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logcabin Offline
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hi all im new to this site.would love to pick your brains and lives to all the problems Im having and see if its posible the doc is wrong in saying he dosent think I have AS..thanks logcabin


Kathy
Re: Son newly diagnosed #2484 05/18/06 04:47 PM
Joined: May 2006
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JGESS Offline
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hey, i stumbled across this posting recently after having extreme shooting pain in my arms after sneezing... I also saw some people saying they have night sweats (which i do, sometimes literally puddles around my chest) and i also experience heart palpatations and I am also very tired when I wake in the morning... I am 24 now and I have experienced these symptoms for 8 or 9 years... I played football and baseball through high school and college and I work out 5 times a week... I also recently had an ekg, blood work and a general physical which came out normal...

Reading your board has throwin up a few red flags for me... Should I be concerned or could I have just something as simple as a pinched nerve??

Thanks for your time!


John, PA
Re: Son newly diagnosed #2485 05/18/06 05:14 PM
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opus Offline
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This is probably going to sound like a crazy idea, its more in the line of preventative, and I don't know if it will help, but here goes...

A few months back I got an Alexander Technique videotape at the library and they went over the proper way to form the body when sneezing. Now, I know sneezes can be random, but maybe it would help to try it... at least prevent some pain...if you can remember to do it before a sneeze.

The tape had lessons on it by Deborah Caplan.

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