Today I wound up with the hard breathing every time I was doing something. Dishes, putting laundry away, mild exertion. I decided to try the albuterol and it did absolutely nothing. I tried it twice. I figured I should go to the Urgent care to see if maybe the symbicort one would work. The doctor there scared the daylights out of me. She said I should go straight to the ER and that with autoimmune neuropathy I could be having small blood clots forming around my bronchial tubes or there could be fluid around my heart. I told her I sent messages to my neurologists and that they just said to see a pulmonoligist- didn't mention going to the ER. Then she went on about medical school 101..... and said I could wind up on a respirator, that she can't believe they didn't send me for a chest X-ray...on and on. So then I asked her if she would let me try the symbicort and decide if I'm going and she wrote the script. She said if I am not getting enough oxygen to my muscles to let me breathe correctly it wont work anyway. I hate this. I wasn't so worried till now.

Fluid around the heart does happen. Not common, but when it does happen, it can be deadly. It happened to my son's high school gym teacher...he was in his early 40's.

Sounds like a thorough doctor to me.

Why didn't the doctor at the urgent care do a chest x-ray to check for the fluid, if she was concerned, at all?? Medical school 101 says she should have done this if she had ANY inkling this might be the problem...vs sending you on your way with a script for a steroid inhaler without any breathing tests being done to confirm it's necessity. Those steroid inhalers have risks. But more importantly, the use of this inhaler WILL skew your breathing tests that your pulmonologist will be doing in the office at your visit. You will need to make sure not to use it for several days before you go.

I understand your concern...as you should be. I would consider going to the ER if this worsens or you get any other symptoms during these episodes...like lightheadedness, weakness, etc. By all means, (if you choose not to go), email your doctor first thing Monday for instruction and express your concerns and what the urgent care doctor said.

If you decide to use the Symbicort.... follow dosage directions carefully. This only works if you use it every day as directed. It will take a few days or a week for the steroid to really kick in.

It is not advised to use your rescue inhaler (albuterol) while on Symbicort. Combining the two bronchodilators can be dangerous and is not advised. This inhaler is designed to prevent episodes, and not treat acute events. So you need to take it whether you feel shortness of breath or not.

Thanks for the advice Mrs. D and enbloc.
I have decided to take it very easy this weekend. I have an appointment with a pulmonologist on Tuesday. My breathing was rough this morning but its been pretty good for a few hours.
I decided not to try the simbicort unless I get worse. I will just stay relaxed all day and won't attempt much till I figure out whats going on.
The strange part is that my neuropathy pain is not too terrible the past few days. Its so weird. It's like this monster in me decides to mess with different parts of me and really goes to town. Its been mostly joint pain, and numb stuff- less intensity in the shooting pain/ muscle spasms. I was able to sleep last night
Maybe my body will kick it out eventually as it makes its way through every part.

Make sure you are using some form of magnesium. This will relax the bronchioles and chest muscles ...

Try stomach breathing. This often helps if there are chest wall muscle issues.

There are many causes of exertional dyspnea....your doctor will try to figure that out.

I really think you should wait to start the Symbicort until after you see the doctor and HE advises you do to so, after he does breathing tests and determines if this is the right course for you. Not to mention, if you use it before seeing the doctor, then your breathing tests will not reflect true readings. If your breathing gets that bad that you need something, then you should be going to the ER.

MrsD is right, it has to be used regularly, not only when short of breath. You also must rinse out your mouth after each use to keep from getting thrush.

Please update us when after you see the doctor...and just keep it easy going this weekend as not to aggravate your symptoms.

I am definitely waiting. Thanks for the help. I do not want to interfere with the tests.

Also, consider the meds you take. Benzos and opiates depress breathing. So if you notice that your breathing difficulties occur when you use the Valium and/or opiates for pain, the drugs may be causing some of it all.

Try to think about when and for how long you have these episodes.

1) only during activity?
2) mostly at night lying down?
3) when you take your meds?
4) mostly outdoors (pollen allergies)?
5) after eating?

Anything or any logs can help your doctor decide what to test for and what course of action to take.

Thanks Mrs. D,
It happens only when I am moving around. It returns to normal when I stay still. It doesn't happen at night ever.
When I go outside on humid days it is very bad. I have to just sit still.
I do have some pollen allergies but they have always been sinus only and not so bad.

I do have a strange thing when I'm eating though. Sometimes I have to take a break from chewing to breath and swallow because my neck and jaw become incredibly fatigued, but the air isn't hard to get in like it is when I move my body. It's like I just don't have enough oxygen to do what my body needs to do. This has improved much in recent days though. Its just really weird.

I don't think it could be the meds. I only need them maybe 3-4 times a week, even then- I only take 1/2 a pill and don't repeat the dose. When I think back to 2 weeks ago, the first time that this happened I hadn't taken anything in days. The past two weeks all together I have taken 2 oxycodone and 2 valiums broken up into different middle of the night flares.