Went to Urgent care for the breathing thing
 

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.

Okay....

Also make sure you show him your photo of the patterning of your thighs... see if he thinks this is a low oxygen issue.

great idea! I didn't think of that.
I am so sick of being sent to different specialists that I stopped explaining my whole case.

What is the patterning on the thighs?? Is it red lacey like? If so, look up livedo reticularis and see if this is what it looks like.

Honestly, your symptoms sound more cardiac related...almost like pulmonary hypertension. Have you ever checked your BP or heart rate when this happens? Can you walk 5 minutes (on a flat level surface) without this happening?

I just recommending PPH to another poster and have the link still open:

here it is:
http://www.lung.org/lung-disease/pri...nosis-and.html

This is not common. I once worked for a home infusion place that was the local hub for Flolan. We dispensed quite a bit of it.
We had patients as young as 8 receiving it.

Let's hope you don't have this... it is awful to medicate and
live a normal life.

Could minor pph actually cause neuropathy if it has been undetected for years? I think it probably could from lack of oxygen.
If I've had it for years though, it was very minor. I remember over my 3 pregnancies that I had a lot of shortness of breath but I was pregnant so isn't that normal?
Also anytime during my interval training that there were back and fourth twisting motion exercises I had to stop because I couldn't get air in until I straightened my torso- don't know what the heck that's about. I just figured twisting exercises were not good for me?? I thought it was odd but never looked into it. That definitely got worse as the autonomic symptoms progressed, but I didn't connect it because at the time I didn't realize how wrong things were going.

I haven't checked bp or heart rate. I can walk 5 minutes on a flat level as long as it isn't too humid.

The rash was confirmed to be levido reticularis on me and my daughter.. They dermatologist said it is part of this disease process and must be autoimmune because of the fact that it only comes out in the sun.

I have attached images of the rash I got and the identical rash that my daughter got with in a few weeks of mine.
Due to the fact that she is having similar (thank God- more mild) symptoms, I really think this is due to a microbe of some sort that we were/are both susceptible to. Whether it's viral, bacterial, fungal..... can only guess. I'm waiting to hear back from my neuro after he consults with his colleagues what the next step is.


Attachment 9012

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PPH is a slow onset disease, people just get weaker and weaker until they are pretty much unable to do anything.

I talked with the infusion nurses at the time....because Flolan is really the Cox-2 enzyme made by our kidneys. Taking too many NSAIDs blocks this and eventually some people have heart attacks from them.
This is why Vioxx and Bextra were taken off the market.
In the news this week in fact are the new FDA warnings coming out for ibuprofen and other OTC NSAIDs, because of this potential.

So Glaxo synthesized Flolan (prostacyclin) for use in treating
PPH. They also use a 20mg dose of Viagra, called Relvatio...but I don't know if it is used still for PPH.
http://www.globalrph.com/sildenafil.htm
The Flolan requires a pump...24/7 IV use. Thus oral treatments are usually tried first. Mucho Mucho expensive too.

Mention to your doctor that you had minor breathing issues before and now they seem worse. If you have a history...well, that would help with diagnosis. Pregnancy is stressful on the mother. I recall a heat wave in early June when I was almost 8 mos, I couldn't do anything. (we don't have A/C either)...so all I did was lie on the couch in front of a fan. But that was the only time I had problems, and I have a mild adult onset asthma.

Are you still taking your fish oil? This will help asthma tremendously....it more or less put me into a remission which has lasted a LONG time..many years. I never need steroids anymore (only used them 3 times)...or my albuterol. The fish oil provides the Omega-3's to support the lining of the lungs.(it also improves the lining of the GI tract.)

I'll be thinking of you on Tues...so let us all know how the appointment goes. I will send positive energy your way...that you do not have PPH.

There are lots of things that could be your problem. So just let the doctor figure it all out.

Your rash is classic livedo reticularis.

Livedo reticularis, is an autonomic process in which the medium sized vessels in the skin are in spasm. It is a vascular mechanism. I have had this rash for 15+ years on arms, legs, and both side of my trunk. It was so profound that doctors would want to take pictures and/or call in other doctors to see. i felt like I was a circus side show...LOL There are medications to reduce the livedo, but not typically used just for that (as they are cardiac vaso-dilators) because the rash alone causes no problems (other than appearance).

I have never heard of PPH 'causing' neuropathy, but I do know people that have both conditions, along with an autoimmune disease (Sjogren's).

Your pulmonologist will help sort this all out. Please keep us posted.

http://www.hindawi.com/journals/ad/2014/710401/

Pretty frightening.
Wondering who I need a pulmonogist or a cardiologist?

en bloc, This is what I could find about it.
The one neurologist says she is pretty sure I have sjogrens, the other says its something in the connective tissue autoimmune family.

Pretty scary.
I am just stuck on how 2 people in the same house could have this with in month of each other. It is so scary.

Both (and only) people I know with PH also have Sjogren's and neuropathy.

I have Sjogren's, ganglionitis, PN, and severe autonomic neuropathy...along with another autoimmune condition called APS (antiphospholipid syndrome). It was considered at one time that I might have pulmonary hypertension and I went through some of the basic testing for it. Thankfully, it was determined that my shortness of breath during exertion is due to my severe autonomic dysfunction, not PH.

I don't know your history, so pardon me for asking questions you may have already answered on other posts. Do you have symptoms of Sjogren's...if so, what are they? Does your daughter have the same symptoms?

Have you been tested for Sjogren's (labs for SSA & SSB)? Or lip biopsy?

Did you neuropathy start first or the symptoms of Sjogren's? Have you had a skin biopsy to confirm SFN?

Frankly, I think you need to see BOTH a cardiologist and pulmonologist (working together). You need a full cardiac work-up as well as PFT (pulmonary function tests).

As for both of you coming down with this at the same time, are you referring to just the livedo or ALL the symptoms? If all, then a toxic element must be considered IMO. I know AI diseases have a genetic connection, but for both to be triggered at the same time is odd.

I have dry eyes, muscle pain, joint pain (with out swelling), terrible brain fog in the beginning, and then a whole load of symptoms that come with neuropathy and autonomic problems.
I was diagnosed with sfn by skin biopsy NLD, autonomic problems from tilt table, and high ANA. sjogrens itself didnt show up in blood work and lip biopsy had lymphocyte infiltrates, but was borderline.

As far as my daughter goes, I am referring to the livedo as well as some foot pain that she describes as electric shocky feeling in her pinky toe when she puts it on the floor to take a step, and 2 episodes of big toe muscle weakness/ vibrating and pain. The big toe is back to normal now and the pinky toe shock is much less intense.
She also is getting frequent headaches, having some insomnia and is extremely agitated. These were all my beginning symptoms. The neuropathy in my feet would come and go and I just dealt with it and assumed it was nothing. If it weren't for the livedo on her, I would have just thought her foot stuff was coincidental and nothing to worry about.

I don't know where you are located, but you would greatly benefit from seeing a doctor I know at Johns Hopkins. Dr. Julius Birnbaum is BOTH an neurologist and rheumatologist (only one in the entire country to be both) and specializes in the neurological manifestations of rheumatological disease, with focus on Sjogren's. He would be perfect for you.

He has been my doctor for 8+ years. He can be hard to get in to see (must submit records ahead for consideration before they accept new patients), but well worth the trip. If you are interested in trying to get into the Sjogren's clinic, I will PM you contact details.

It will be interesting to see what your pulmonologist has to say tomorrow. I hope he refers you to a cardiologist for work up as well.

Please update us after your appt.

I'm wondering if you have ever had a cardiac work up? If not mention it to the pulmonologist and see if he thinks it might be needed. It sounds like whenever you do any kind of excretion it starts. That can happen with heart issues also. I'm in no way saying it is that but it won't hurt to mention it.