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Re: Son newly diagnosed #2466 01/19/05 11:00 PM
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This message board is good for me too. It helps to share concerns with people who understand the struggles and overwhelming feelings of being a parent of a child in pain. My story sounds so similar to many of yours. Mom Advocate--we too got dismissed from first a gastro-enterologist (sp?), and then a supposedly highly respected pediatric rheumatologist. We finally found an adult rheumatologist who was willing to see our son (she was recommended by a friend--what a blessing!). Even she was a little unsure that all his symptoms could be spondylitis. An MRI confirmed what she described as "classic AS". Alex started on ibuprofen which did little. As I mentioned earlier since sulfasalazine, he has not had a flair. I'd be happy to e-mail if you have more you want to ask or talk about--daytondunn@mac.com

Ryan's mom--My husband's cousin has a daughter who was diagnosed with a serious liver disease, then IBD and finally AS (after finding out about our son). They now say it is all probably related. Your son (and you) have been through some horrible stuff--I hope putting the pieces together will get your son on the path to being healthy. My prayers are with you.

Re: Son newly diagnosed #2467 01/20/05 01:43 AM
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Sorry about your sons diagnosis.

Keep that young man as active as you can. Execise I found to be the best defender from AS.
I was diagnosed with AS about 2 1/2 months ago. I'm 31, I look back and I know I,ve had it from about the time I was 19.
My symtoms started with sciatic nerve pain then acute upper back pain to constant lower back pain and stiffness, constant dull pain all over. If I got bumped to hard my muscles in my side would cramp and it fealt like my bones were ready to break.

and now its my left hip. starting in my left knee.

I have had that same with preesure in my chest.
It feels like its my heart. Its like I get pressure right over my heart and Im unable to take a deep breath. Its not painful until I try to breathe deep. It almost always last about a minute. This has probly happend to me 50 times in the last 10 years. I too have had some test done because I was freeked out from it. The docs were unable to find anything. My opinion is the issue Im getting in my chest is my rib and muscle in that spot. Its an isolated spot about the side of a thumb. I think it may be cramping in that spot just like i get cramping in my side ribbs, my back. Acute cramping unlike cramping in your side when you run. I tend to get these cramps right before I get a flare up.

I can say once I started taking 20 mg of bextra a day, 95 percent of my AS symtoms are gone. Ive been on it for about 4 months.

A friend recently told me about how he once had heart pulpitations.FAst slow stop fast He said he suffered from that on a regular basis. His docs found nothing wrong with his heart. He said he talked to a dietrician and was told his body lacked potasium and that was the cause. He said he now takes potasium supplements daily and no longer has heart pulpitations. He said he stopped taking the potasium at one time to see if that was really the cause of them ceasing and they came back very quickly. So he went back on the potsasium and the pulpitations once again left.

blessings to you and your son. smile

Re: Son newly diagnosed #2468 01/20/05 03:12 AM
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Hello: I just wanted to say that I wish you all the very best in all categories. In auto-immune diseases, the inflammation can be such at times that it causes inflammation body wide, including blood vessels. This can leave behind calcified granulomas that show up on x-ray. These are remnants of old inflammation 'pockets' and are or can be quite common with inflammatory diseases. Your son will most likely pass this stage of rapid heart beats, but no one can say for sure because so many people respond differently. Just hang in there and know you'll always find support here. Have a great weekend and i'm glad you are finally on the right path for treating your child's illness. Best wishes, Della

Re: Son newly diagnosed #2469 01/20/05 06:45 AM
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KatiKat - the pain in your muscle is probably the muscle. I get horrible muscle spasms, cramps and contractions - and pain.

A Mom - Sorry about your son's diagnosis. As someone else mentioned, inflammation affects everything - including smooth muscle. I tried increasing potassium in my diet and taking potassium supplements and it helped a little bit. Right now I'm adding vitamin D to my supplements because I'm low (a blood test is needed because too much Vit D is a bad thing, too.)

Ask the doctors if they've done a lupus panel. It's a HUGE blood test - many vials of blood. The reason I ask is because my mom had blood clots. One of her earliest symptoms was what felt like a rapid, irregular or skipped heartbeat. Doctors hooked her up to a monitor and could find nothing wrong with her heart. Turns out a blood clot in the lungs can feel like an arrythmia. A lupus panel can reveal (1) more information on the AS since lupus, Crohns disease and spondylitis are related diseases and (2) a genetic factor that increases the risk of developing blood clots (I'm positive for that genetic factor).

Good luck.




Diagnosed May, 2004 with undifferentiate spondy. Now have AS diagnosis. HLA-B27 negative female with no family history of spondy. Taking Mobic and Cymbalta. Discontinued Enbrel, Oct 2005.
Re: Son newly diagnosed #2470 01/20/05 09:38 PM
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Hi Folks,

For those interested (you may have seen my post) - we've overhauled our Juvenile Spondylitis section and it contains a ton of new information:

JSpA Main Page

Areas covered include:

JSpA Symptoms

JSpA Diagnosis

JSpA Treatment

JSpA Medication

And more.

Best,

Chris

Re: Son newly diagnosed #2471 01/21/05 12:54 AM
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About that sneezing ... my chronic post-nasal drip gets much worse when my inflammation gets bad.




Diagnosed May, 2004 with undifferentiate spondy. Now have AS diagnosis. HLA-B27 negative female with no family history of spondy. Taking Mobic and Cymbalta. Discontinued Enbrel, Oct 2005.
Re: Son newly diagnosed #2472 01/22/05 07:00 AM
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Thank you all for responding. What a wealth of information you have given me. Now I must study each issue you all have shared and then assimilate it with what I already have and know about my son. I'll try to respond to each one of you. We will try the potassium to see if that helps the fast beating in his chest. This disease is so confusing, because for the past week he has been pretty much pain free. He's gone as long as 6 weeks without pain. Actually, the pain is really an ache - aches in what he describes as his muscles. That's why I didn't think it was presenting like AS. The docs didn't explain about referred pain/ache. The sneezing I referred to was just a normal sneeze. But the pain AFTER he sneezes is excrutiating - radiating through his chest and usually down his arm. The pain lasts at least 10 minutes each time. This pain comes and goes. He'll be able to sneeze for a month or two and then it'll be back and he just dreads sneezing. Does anyone experience such a thing? Can anyone describe a "typical" flare? I've never had it explained so I don't know if Taylor's episodes with bad aches is a "flare". Thanks.
Mom Advocate

Re: Son newly diagnosed #2473 01/22/05 07:48 AM
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Hi, Mom: Sorry to hear about your son's diagnosis. As others here have stated, though, it's good to know what you're dealing with so that you can take a proactive approach. Often I take comfort knowing I'm doing my best to fight this stuff.

I've had problems with sneezing myself, and that usually happens when I have inflammation in my spine. I would bet that it wouldn't just have to be the spine but probably costochondritis (sp?) also (I think you can find more info. about this on this website). I have heard of other people describe this pain, also. I didn't have problems with it for a long time, but when I finally did during a particularly bad flare, I had already read people's description of it so it didn't worry me as much. The breaks in between would almost seem to confirm this. Best to ask and check it out, though, just to be safe. For me, it seemed to be something in the forceful jarring of the sneeze that aggravated things and caused the additional pain.

I wish I had more to offer you than just my prayers and best wishes. I'm so glad that your son has you in his corner.

--Deb

Re: Son newly diagnosed #2474 01/22/05 09:03 AM
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Mom Advocate,

I am going to address one thing here that you seem very concerned about that didn't seem to have been answered as of yet.

You son's rapid throbbing heartbeat that he and others can see and he probably feels. It is called tacchycardia. It is nothing to worry about other than he has a fast pulse. I suffer from this, and have AS and Hodgkin's Lymphoma. I underwent a nuclear radiogram of my heart, called an RVG recently, and although my pulse is somewhere in the high 110's or even 120's at times, the radiogram showed my doctors that I have a very, very strong heart.

One other thing that can bring about a rapid heartbeat, but I am not sure this is so much true with AS patients but I do know is common in cancer patients, is sometimes Anemia can cause a sudden change in blood pressure. This can bring about "night sweats", and this is followed by the heart pumping harder and faster to move the blood and stopping the sweats and chills. Regular blood counts will be able to tell you and your son if he is anemic.




--------
Connie
Re: Son newly diagnosed #2475 01/22/05 07:12 PM
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So far, my son is not anemic. The rapid pulse seems to be evident in a vessel to or from the heart. You can see it rapidly pulsating. I can't tell if it is heart arrythmia or rather a weakness in a vessel wall. That is what concerns me. Regarding the sneezing, you've reaffirmed that this is an effect of AS. It is the jarring of the sneeze that causes the radiating pain. I just hadn't heard of that and no one had mentioned it before. Now, can anyone explain or describe a flare? My son has many good days and sometimes weeks, then the ache will return in a new place. Is that a flare? Also, many of you say an early diagnosis is good because you can treat and fight the disease. Do you mean that you can treat with drugs and exercise? So many questions are being answered. Thanks. I probably would have spent days, months, and years trying to diagnose a second disease of the muscles. Now I'm beginning to understand his aches and pains are symptoms of AS. Lastly, I don't think he has had a Lupus workup. Someone mentioned that. I'll research this more. Mom Advocate

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