Update on breathing
 

I went to the pulmonologist today. I told her what my diagnosis is and that it is thought to be autoimmune- possibly sjogrens and that was pretty much all she wanted to hear about my story.

As I could tell that she was one for getting down to business and not one to listen to what she felt was useless information, I told her my basic concerns of autoimmune damage to organs and the possibilities that the urgent care dr. mentioned and that I was told I should go to the ER on Friday.

She did have several of her own questions about my breathing though, and felt confident that I do not need the ER and I can wait until next week for testing and X-ray.

She said that I have post nasal drip and that I need to get my allergies addressed.

I told her that I tried the rescue inhaler in the middle of a hard time breathing 2 times in 1/2 hour and it did nothing. I am positive I did it correctly. She said that it should work and to use it and sent the nurse in to explain it to me. That was useless. Im confused about that. I asked if someone can suddenly have asthma type breathing symptoms from allergies and she said "sure it is":wink:
That would be great, but it would be a heck of a coincidence.

Doesn't sound like a lot was accomplished today but at least she will be doing some testing and x-ray.

Did she consider any cardiac testing?

The inhaler would work IF (and only IF) it was a true asthma attack. If this is cardiac related, then it would not help your symptoms. I agree with you that it would be a big coincidence that allergies would cause this sudden symptom.

Did she do any breathing tests in the office? Or did she order a full set of PFT's with your x-ray next week?

Can you 'make' your symptoms appear by exerting yourself? If so then you need to tell her this and demonstrate this in the office so she can see it happen. Take her to the stairwell if necessary.

She just said we would do pulmonary testing and that it would take about an hour. She said she is not concerned about anything with my heart.
I told her if she let me walk two circles around the office I could show her exactly what was happening and she said it wouldn't be necessary. I asked if during the pulmonary testing if there would e an exertional part to determine what is happening and she said no. Ill get the testing and the X-ray and see if I need to go to another practice for a second opinion.

I took a zyrtec last night as recommended by the doctor just as an experiment. The nurse said it might make me drowsy- so I thought that was only a plus since I don't fall asleep easily anymore. It did clear my sinuses up a bit, but did not make me tired at all. :mad: This morning I am still sneezing like crazy and coughing. My breathing has a bit of stridor- so the zyrtec probably wasn't worth it.

The only other thing that I can think of is that I have seasonal allergies plus some possible bronchial infection??
It would just be odd that the bronchitis chest symptoms would precede the rhinovirus type of symptoms which came 2 weeks later. Hoping this is the case though.
My littlest one had a coughing fit last night for about an hour and had a raspy voice yesterday, so just maybe this is some infection thing?? Hope

You should journal your symptoms so you document any patterns and/or relations to other factors like infections, allergies, etc. This way you will know whether there is a connection or not.

If you offered to 'show' her what happens and she said no, then you need another opinion...from someone who will take an interest into the matter.

Maybe your PCP will consider a cardiac consult...have you talked to him/her about your symptoms?

When I was first dealing with the neuropathy about a year ago, I had some breathing issues. Same deal-exertion would wind me quickly. Felt like air hunger. Stairs were awful.

I ended up getting a complete cardio workup-echo, stress echo, ekg, 3 day heart monitor...I couldn't even complete the low key stress test haha.

But-my heart was completely fine, and there didn't appear to be an issue with my lungs.

Eventually the breathing issue went away. I get it a bit sometimes still-but not often, and only when I am low on sleep and high on stress, and also when it is damp and humid. For me, I think last summer the breathing issue was caused by extended stress (wasn't even diagnosed with SFN at that point-so I was doctor hopping and getting millions of tests) and lack of rest. I had pretty wicked insomnia off and on. I also wasn't eating as well, because I had lost my appetite.

Once the insomnia got sorted out, my breathing seemed to follow suit, but it took some time. My breathing does get a bit weird also on humid days-I have allergies, pretty bad dust mite ones-so year round. Damp days bring them out, and I have a harder time allergy wise on those days (breathing, tired, pressure around eyes).

I completely agree that with your history of autoimmune and autonomic symptoms that you should get a cardio work up-at the very lest to rule out anything in that area. I'm really glad I got one done even with everything coming back normal. I hope yours turns out to be something allergy related and nothing organ related. Lots of luck.

I can definitely get a consult. I could go back to the cardiologist who found my low blood pressure. I probably should.
What should I ask for? Echocardiogram? I think that was the one test I did not have.

I'd ask for a stress echo, which means they do an echo, make you go on a treadmill, and do an echo once your heart is pumping hard....you'll also be hooked up to a BP monitor during this time and an EKG. That's how mine was done. I know you're close to NY, I liked my cardio doc. I can give you his info if you want. He was thorough.

Have you considered mitochondrial issues may be playing a role in all of this? My husband would get winded/exhausted very quickly too even after starting testosterone. He started using a supplement for mitochondrial support from Life Extension and it made a significant difference in his stamina. He went from only be able to sweep one sidewalk before needing to take a rest to being able to sweep the entire walk.

Just a thought.

Honestly, I wouldn't "ask" for anything. Sure a stress echo would be an appropriate test but you need to go in there with the only focus is sharing your symptoms and asking for them to find the cause. Doctors don't like to be told what tests to run or what patients think is wrong. They want to be the doctor and be in control (we all know how big their egos are---lol)

You need to show them what is happening. I have experienced the same thing as you and literally took my pulmonologist to the stairwell to 'show' him what was happening. It was an eye opener for him. The cardiologist had me step up/down off the foot stool at the end of the exam table...which produced the same thing and he could 'see' what was happening with my heart rate and breathing. He simply hooked up the EKG while I repeated the foot stool thing and sure enough, he could 'see' the Dx of inappropriate tachycardia. He helped him to further Dx my autonomic dysfunction.

You should also document as best you can what things produce what results (what exercise causes what symptom) and write them down. Experiment with things so you know how to describe exactly what is happening. Take your heart rate during these episodes and even your BP (most machines do both). If you have low BP (autonomic drops), then your heart rate will increase when your BP drops (compensatory action) and this combo makes anyone short of breath.

Hi Healthgirl,

I am sorry you have been experiencing some "resistance" from the pulmonologist. I am concerned she did not allow you to demonstrate your breathing issue in front of her. I hope she has ordered a full work-up and will get the full picture on testing this week. Perhaps she was planning on getting the full picture this coming week; it just seems reasonable to allow you to demonstrate while you are right there with her. :confused:

Please also pursue the heart testing.
Myocardial Perfusion Imaging (aka "Nuclear Stress Test) was the last heart test I had when I was having shortness of breath, etc.

http://www.heart.org/HEARTORG/Condit...52_Article.jsp

This is a "stress test" along with a SPECT or a PET scan.
I cannot be sure what you need for testing. I am just sharing with you.
I had been taken to the ER with shortness of breath and low oxygen saturation measurements (the clip they place on a finger to measure O2 saturation percentage).

It was my 12th visit to the ER that year, after prolonged flu complications.

Whenever an inhaler is prescribed, there is always a chance the type prescribed may not work for any given patient or may exacerbate breathing issues.

My first allergist had taught me to always use a "Peak Flow Meter" @15 minutes, 30 minutes, 1 hour and 2 hours after using a NEW inhaled medication. Taking these readings and comparing them to a pre-med/pre-inhalation "baseline" reading then clearly demonstrates if the inhaled med is helping or not and also shows if you are having a negative reaction to the inhaled med. It's an objective measurement.

I am so glad he had taught me to do this, as I have found 3 commonly prescribed asthma meds/inhalers which were quickly making my readings drop (worse). The Peak Flow Meter can also help you to see when you do/don't need to use your inhaler. (Note: This is not an "incentive spirometer." many people get these two devices confused with one another.)

http://www.lung.org/lung-disease/ast...flow-rate.html

If you were not prescribed a "chamber" for your inhaler, please ask if you need one. Doctors often "forget" to prescribe them and the chambers deliver more medication into the lungs, rather than depositing the inhaled med at the back of your throat.

Inquire as to whether the Pulmonologist or your GP will prescribe a "Peak Flow Meter" for you so you can track readings when you wonder about the status of your breathing and/or whether inhaled meds are helping or not.

Hope something in this post is helpful to you.:hug:
Hope you are feeling better.

To our healing!:grouphug:
DejaVu

What does this mean?
 

Over the weekend my breathing has become pretty normal. I did 15 minutes at about a 3.0 on the treadmill yesterday and 20 today. My breathing was good. I am going up and down the stairs and same thing. Yesterday was 68% humidity and I was much better outside than I was for the past 3 weeks.

What does this mean?

Probably not pulmonary hypertension or fluid around my heart right? That can't be intermittent can it?
I am not coughing anymore either.
Does it sound more like bronchitis? With no fever? Asthma? Maybe bizarre autonomic symptoms that fluctuate?

I also think this pulmonary testing is going to be a complete waste especially since this lady is opposed to thinking I should show her what is happening- and it isn't happening right now anyway.

Yes, I think intermittent is a good sign. Something was irritating your lungs... pollen or mold spores.

I hope you continue to improve with this, therefore. ;)

Yes, intermittent improvement is often a good sign. :)
Wishing you a full recovery.

To Our Healing!
DejaVu

Healthgirl:

I'm glad things are at least a little better for you. I can't imagine how scary this "episode" must be for you. I'm really pulling for your continued improvement. :)

Update
 

I just got back from the pulmonary test and I really wish I listened to myself and cancelled. This was one of the worst doctors I have experienced on this journey. Rude, condescending, in a huge rush.

Her diagnosis is asthma/reactive airway disease. She had no interest in seeing how it happens upon exertion and that this problem is new to me along with going from a healthy and active to a nerve damaged/ autoimmune situation.
She talked over me in the 10 minutes of appointment time in a loud sing songy patronizing voice so that I couldn't ask questions- and after experiencing her for the second visit and giving the benefit of doubt, I didn't even want to ask anything.
So glad I have this place to vent :mad:

Pfff the arrogance of some specialists... It has no place in healthcare. Where is the sublety? The past months I've been treated likewise; they conclude a diagnosis along their vision according to my story, which I had to rush out during an overhasted interview. They do not listen to what I think I have and rather wave that one away and replace it with what they think makes more sense. I've been researching my condition for the past few months and I actually feel the symptoms, but they know better within a few minutes because they have better understanding of the literature... I've unfortunately proven them they misdiagnosed...

If you can muster up the extra energy and time, write up a review of this doctor so others can avoid this nonsense.

After doc appointments, I get feedback forms in the mail from the hospital or clinic asking me to rate the doctors performance. Before I got sick, I used to just throw those things away. Now I actually started taking the time to fill them out.

And if she had to live in your body for 5 minutes, she would probably stop her loud sign songy voice enough to listen to you....ugh these type of docs get my hackles up.

Hi Healthgirl

Sorry you had to go through another experience with such an unsympathetic doctor. I hope you manage to find a good doctor out there - keep searching - there are a few around. Any chance of getting references from others for one in your area.

Intermittent symptoms are a real challenge - so often by the time you actually get an appt. the symptom is in recess and the doctor either doesn't believe you or ignores you. You probably already keep a log of the episodes - this can be helpful if your doctor is willing to listen - also useful for yourself to determine patterns, triggers etc.

Wishing you better treatment for future appts. and hoping you see improvement soon.

Sorry you had this bad experience, but glad you're feeling better on the breathing front. I'm just so hesitant to go to any doctor now that I don't personally know a patient of. First-hand recommendations go a long way in my book.

Yeah, I looked this one up with my zip code on the internet. I sure didn't think a doctor could turn out to be such a beast!
So far she was the only mean doctor I've dealt with. One neurologist I dealt with was just a bit arrogant so I got rid of him and switched to someone recommended.
If I wind up needing a pulmonologist for this I will definitely get advice from someone around here.
Hopefully this flare up of "asthma and allergies" was just a quirk.

Hi Healthgirl,

I was hoping you'd have a better experience today. I am sorry you did not get to tell your story, along with completing the testing. I am sorry you did not get your questions answered. :(

It's much more healing for the patient, and it promotes a better relationship between the doctor and patient if the doctor will listen to the patient's concerns and account. It's critical to answer a patient's questions. :hug:

Yes, consider writing a review of your experience.

Do you feel you have been misdiagnosed?

I think you have other concerns, as well, as in heart functioning concerns?

I hope you will continue to pursue the answers to your concerns.

Warmly,
DejaVu