Help! Extremely worried parent

[Arlington]

I pray to heaven that I'm worrying too much. My wondeful, healthy 16-year-old daughter began having heaviness in her chest and difficulty breathing six weeks ago. It flares up for a few hours, then disappears. Some days, no problem at all. We've had her in emergency three times, and they did lung X-rays, blood tests and one breathing test - and found nothing wrong. The MDs say it's probably anxiety. But she says she's not anxious. Would the tests in the ER have picked up the possibility of ALS? Now she says she has tingling in her hands, and some stiffness in one leg - although it's not clear how recent that stiffness is.

I don't want to seem like a panicky parent and take her to a neurologist and possibly panic her. She has been doing some internet research and has already asked me if this could be ALS. I keep saying no, it's not possible. That breathing problems would only come at the end, not at the beginning of ALS. But then I read they can sometimes be an early symptom. But if breathing is impaired, wouldn't it be impaired continuously, not just for a few hours a day?

Can anyone please put my overactive mind somewhat at ease. Help!

 

[lostinlouisville]

Hey

I am not a Dr. but last year I was admitted for about the same symptoms. I had Hyperventilation syndrome. You don't have to feel anx. to be almost constantly hyperventilating, Your chest will feel heavy, trouble breathing, hand tingling and weakness in legs. Watch your daughter is she breathing with great chest motions or stomach. We are suppose to breath with the abdomen not the chest, they had to retrain me to breath properly and it has helped a lot. Hope she feels better.

 

[wright]

That does not sound like ALS at all.

Did they do an EKG on her? It could be as simple as a PVC (preventricular contraction), which can come and go like what your daugther is showing. It could also be any number of other things.

Call you GP and tell him/her your daughter's symptoms and I'm sure she will get the guidance she needs.

I don't think you need to concern yourself with ALS.

Take care.

 

[CB1977]

I certainly understand your anxiety and concern. I had some symptoms and when I did a search immedaitly ended up at an ALS website. I am not at all an expert nor do I have any experience with this horrible sickness. I have however, spent a lot of time in the last 3 weeks looking over the symptoms of ALS, MS, and different nero disorders. From what I have read on this site and others, it seems like the breathing issue is one of the last symtoms of ALS. Hope this helps.

CB in Ohio

 

[CindyM]

I too have breathing problems and am not diagnosed with ALS. ALS is an extremely rare condition and even rarer still in younger people. So I will say this with the caveat that none of us here are doctors: a lot of conditions are benign or at the very least, treatable, but sometimes only a larger clinic associated with a teaching hospital can identify them.

I'd take her for an evaluation at the nearest children's hospital. They can pinpoint stuff sooner than most local doctors, as they have more experience. Please let us know how this works out! Cindy

 

[Arlington]

I want to thank all of you who took the time to reply. I appreciate your responses, and they have calmed me down - at least somewhat. We already had our daughter assessed at a fine Children's Hospital, as well as in the emergency rooms of two teaching hospitals. Nothing was discovered. Our G.P. has seen her as well, and suggested we just "wait and watch" for any further problems. I guess, based on the valuable feedback I received here, that's what I'll do. Nothing to be gained by my alarming my daughter or my wife with panicky insistence on pursuing this further (with a neurologist) at the moment. It's helpful to know that rational people such as you folks haven't jumped to the kind of catastrophic conlusion my mind has been racing toward. Maybe tonight I will be able to get more than a few hours of sleep and stop the obsessive worry.

My sincere thanks, and I will keep you informed. What a supportive group!

 

[clint31]

Could be lyme disease. just a thought

 

[Justin111]

Hi Arlington,

I just wanted to say that a lot like your daughter, I had a lot of trouble breathing for a couple months along with muscle stiffness and tingling in the hands among other symptoms like twitching that it seems your daughter does not have.

I went to the doctor for the breathing troubles and they did a lot of tests all of which came out fine. Then they decided to test me for pertussis (whooping cough) and it turned out that I did indeed somehow contract pertussis which is known as the 100 day cough. Does your daughter have an associated cough with the breathing trouble? I did not have a serious cough but I did cough and had trouble breathing but they put me on antibiotics and I think I have pretty much ridden out the pertussis.

I still have the other symptoms and my neurologist also has me on a wait and see approach (for the last 2.5 months in fact) but the breathing is much better now, night and day actually. I just thought that this might be something to consider in regard to the breathing. Hope she gets better soon.

 

[Al]

Back in the days of being a firefighter the classic symptoms of hyperventilation were chest pain, tingling in the hands and the fingers would curl in some cases. If they didn't find anything at Sick Kids then you shouldn't even be thinking ALS. Having a child ill without a known cause is nerve wracking but I'd bet it's nothing neuromuscular.

AL.