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

Attachment 9013

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.