Sleep study, update

[patricia1]

All I know is whatever I have is moving too fast, and I know the majority of als is slower. But I also know that I can't work or even walk too far without being out of breath. I am uncomfortable even now typing as my shoulders hurt. Sleeping is full of anxiety with frequent waking. Cramps in calves. Had to go to emergency room last night because couldnt get my breath after taking out the trash, heart rate 150 etc. Wasted trip, they give you o2 when perfusion was 99! Did anyone check co2, or blood ph, no. I believe I will have respiratory failure or give myself a heart attack before I have a diagnosis of anything!

you need to get another cadio workup. Stress tess and echo. You dont have ALS. Look up cardio symptoms you have them.

 

[pldo]

We all get hyper about our symptoms. I know we have all posted a lot because we are scared. For example, I woke up with a sore jaw yesterday and a sore throat today and I thought okay here comes the bulbar onset- instead of maybe I have a cold and that it is really dry where I live. We should not ban anyone who is scared.

Billy- you are making yourself worse with the anxiety. I too have had the racing heart beat and the problems breathing- I went to the doctor and they found that I have high blood pressure and that I need to take it easy more.

There is not a day that goes by that I do not think that I might have ALS- but I am trying to enjoy my family and what I do have. Every day that you have with the ones you love is a gift.

 

[ltr]

Neuromuscular diseases CAN cause fast heart rate and shortness of breath. Billy may have anxiety, but with his other symptoms this should be taken seriously. Myopathy can certainly cause rapid heart rate and shortness of breath......I know.....I have it. And my cardiologist said that was the reason. He doesn't need another cardiac workup since his was just clear, he needs to see a rheumo and a good neuromuscular clinic. Good luck Billy.

 

[pldo]

I agree that Billy should be taken seriously. I think all of us who have the myriad of symptoms should be taken seriously. I just think some of us make things worse by worrying about it so much- but how can you not worry when you think you could be facing something fatal?


I dont know if it was this thread or another- but what exactly is polymytosis? Once it is diagnosed who and what can help? I have been reading and I know that some of you are seeing a rhumetologist- I thought that they were only for arthritis. I have also read posts that some of you are seeing endochronogists- how do they help? Sorry for all the questions

 

[CindyM]

Ok everybody. Time for a quick reminder.

1. First, we do not ban people for the crime of losing a popularity contest. Sorry but it just is not good policy.
2. Second, the law of averages says that somebody will annoy you at some point, human nature being what it is. The best way to deal with that is to use the PM system, or, better yet, ignore the offender.
3. Finally, NOBODY can take over this board or any threads unless we as a group allow it. The most effective way to prevent this is to not respond when somebody starts a thread that you disagree with, or posts a message that you disapprove of. If enough people do this, the thread dies a natural death. I have seen it happen over and over.

Last time I posted all these hints some kind person PM'd me to remind me that we are all adults and I do not need to reiterate these points. I agreed at the time but now the issue has come up again. (sigh) Cindy

 

[ltr]

Hi Pldo, polymyositis is one of the myopathies. Myopathy mimics als and causes severe illness and debilitation. The only time a person dies from it is from respiratory failure, but it is treatable to an extent. I am on Prednisone and go to Johns Hopkins in Jan. to have methotrexate or IVIg started. A rheumatologist diagnoses and treats autoimmune diseases which are sometimes the cause of myopathy or polymyositis. Autoimmune diseases are the causes of many other illness....some even think they play a part in als. Here is a link from the MDA that explains the myopathies. I hope this helps, but feel free to ask away.....that's why I'm still here! Go to the bottom of the MDA page and polymyositis is under the inflammatory myopathies.

http://www.mdausa.org/disease/

 

[crystalkk]

Cindy,

Thank you, very well said....

 

[CindyM]

Thanks Crystal- we try.