Jade123

I wrote a longer intro post yesterday but want to write a much shorter one with my specific questions, hoping for some guidance! I have failed four pulmonary function tests that say I have a restrictive airway disease. Shortness of breath is my #1 symptom and is completely disabling for me, more so than the tachycardia, low BP, etc. I also have a mast cell disease (MCAS.) My questions are: - Does anyone else deal with this level of SOB and how do you cope with it without losing hope? - Have others failed a PFT test and been diagnosed with a restrictive airway/lung disease? (I do not have asthma) - Can this level of SOB (requiring a wheelchair and PFT's at 70% of normal) be related to dysautonomia or MCAS? Thank you in advance for any replies. There is so much wisdom on this board and I have been reading a lot of posts from prior years which have been very helpful.

Thank you and that is helpful. Does the other person get the alert, too, or only if they are also following the particular thread. Sorry for all the questions!

Thank you MomtoGiuliana and Corina for the warm welcome! Am struggling a little to figure out the board and didn't know it is not okay to bump up old posts and apologize about that. I also tried to "like" a post but it told me I had "reached my quota" and never allowed me to like anything. Is that feature disabled or not used? Am also not sure how you tag or alert someone so they see my message? I will start a new thread specifically re: breathing and PFT's and make it much shorter. I thought it might help if I gave my background vs. jumping right in with my questions re: dysautonomia and PFT's and breathing. My shortness of breath is so poor and the #1 reason that I am disabled and am trying to learn if many with POTS/dysautonomia have this symptom or fail PFT & spirometry tests.

Yes it is very expensive b/c no generic yet. I don't think I am a candidate for it for lots of reasons (and it has two food dyes which I am allergic to b/c of my MCAS) but I am still going to ask my cardio about it in Dec.

Thank you Katybug and I was not sure how to tag people or alert them if I respond to an old post or pose a question? Is it allowed to revive old posts from years back if they relate to my question or does no one see them? I only belong to one other forum and the rule is to always find the topic and revive an old post vs. starting a new one on the same topic but I think it is the opposite rule here. Sorry for all my questions and I want to follow the right protocol! I tried to set it up to receive e-mail alerts but so far I have not gotten any even on threads that I am following. I did search of the forum for PFT's and restrictive airway diseases and read over 100 old posts last night (until 3 AM!) that were incredibly helpful and informative but not sure how or where to ask questions where people will see them. I wrote an introduction thread so people would know my story but it sounds like maybe it is better to create a new thread with just one or two questions vs. a longer intro thread? Thank you so much again!

Am bumping this post back up so more people can see it (I hope that is okay!) and hoping someone can relate or give me some feedback. Thanks again!

Ariella, I am not sure if you are still posting on this board but was wondering which neuromuscular disease you were being evaluated for in regard to your restrictive lung disease? I am in the same boat and trying to gather info. Thank you in advance!

Can someone explain how or where you can get the acetylcholine antibody test? I am very interested in this but was told it is only a research test and not done clinically but it sounds like it can be done. I would love the info! What type of doctor orders this test? Thank you in advance.

I hope it is okay to revive an old thread (I am new to the DINET forum) but this one caught my eye b/c tachycardia in the 160's to 170's in my sleep was my very first symptom in Jan 2013 that something was seriously wrong. I was diagnosed first with IST and later with POTS (and then a series of multiple other diagnoses) and put first on Metoprolol and then Atenolol. This thread makes me feel less alone as I had yet to find anyone with that level of tachy in their sleep. Does anyone know for sure what causes it? I do not get it anymore with the Atenolol but I have profound shortness of breath and am wanting to experiment with tapering off the Atenolol b/c I also have MCAS and have learned that BB's are bad for MCAS and can degranulate mast cells. Would love to hear any feedback. Thank you to everyone in advance!

Great poll! What I am trying to learn is if anyone with dysautonomia has been diagnosed with a "restrictive lung/airway disease" on a pulmonary function test? My 02 sats are almost always normal (only two occasions where they went into the 80's) but I have failed four PFT tests and all have shown a restrictive lung disease. I do not have asthma or any constrictive lung issue. I have severe dysautonomia and mast cell disease (MCAS) and other health issues but my absolute #1 problem is shortness of breath requiring a wheelchair. Am wondering if I am alone in this or if this occurs for others with autonomic problems. Am desperate to solve this and figure it out! Thank you in advance for any feedback.

Ancy, thank you for your reply re: Ivabradine. I am still learning how to use this forum and figure out if there is a way to get an e-mail alert when someone responds to me? Wow, I can't believe your HR was going into the 230's! That must have been incredibly scary. Mine was going into the 170's prior to starting Atenolol in 2013. I am going to ask my cardio about Ivabradine at my appt in Dec b/c I would love to try something that does not lower my BP or possibly make my MCAS worse. When I read the prescribing info on Ivabradine, it said that it can cause a-fib which is what scared me as I tend to be the one to get rare side effects. But I am going to inquire about it anyway. Thanks again.

How are you doing with Ivabradine and how does it compare to Atenolol or BB's? I am hoping to get off of BB now that I have official diagnosis of severe MCAS but have been on BB since 2013 for tachycardia so I know that I cannot just stop it.

@dizzygirls, Shortness of breath is my #1 symptom for the last year and continues to worsen. I just wrote an introduction post and am new to this board so hope it is okay to jump in! Am not sure if I need to put the "@" before someone's name to tag them in my response?

I have been trying to join DINET for a while, but am not computer savvy, and want to thank Katherine (I assume the moderator- please forgive my ignorance!) for her help with this and it worked!!! I have been diagnosed with severe dysautonomia and mast cell activation syndrome (MCAS) but have had many triggers and illnesses along the way so it is difficult to assess what is caused by what. Will share my story as best I can and am so appreciative of any feedback that I receive. Was relatively healthy until 2010 when I had an unknown throat infection and given the antibiotic, Levaquin. I was ignorant of the dangers of FQ antibiotics at that time and after seven pills, I had a systemic neurotoxic reaction which also damaged the tendon in my right arm. I was very ill and saw many doctors and did physical therapy to try to heal my arm. It was never clear what the initial infection was except that it was not strep (after initially being told it was.) After about 1.5 yrs, I had "recovered" and had a minor ob-gyn surgery in 2012 which went well but was immediately ill following the surgery and one week later diagnosed with mono from the EBV virus. I was very sick for two months with severe mono but again believed that I had "recovered." Then in Jan 2013, I had an unknown illness (we suspect viral) and I began having severe tachycardia into the 160's and 170's. The tachy was occurring in my sleep and waking me up several times per night. I was still working full-time at that point and began seeing a cardiologist to figure out what was happening. They did a sleep study which ruled out sleep apnea and then gave me a diagnosis of Inappropriate Sinus Tachy (IST) and put me on a beta blocker (Metoprolol and then Atenolol.) The Atenolol stopped the high tachy in my sleep but it soon switched to POTS in which every time I stood up or had a positional change, my HR was going into the 120's to 140's. Eventually we found the right dose and the tachy mostly stopped. However, in addition, I have very low BP (often 80/50), frequent low pulse pressure (18 to 20 points between systolic and diastolic) very low body temp (often 96 or 97 degrees) and I developed a shortness of breath. I also have Hashimoto's Disease (thyroid) but this is well controlled with small dose of med. At first I was short of breath just walking up stairs or long distances but then it progressed to the point that in Oct 2014, we bought a wheelchair. Now I can only stand and walk for a few feet or a few minutes and use the wheelchair 100% outside and often even inside our apt. I also get short of breath from anything raising my arms above my head, trying to open a bottle, blow out candles on a b-day cake or sometimes just standing to get dressed. I have been on disability since Feb 2014 and this illness ended a 16 year career that I loved. Along the way, I have seen many doctors and was assessed by one who felt I had ME/CFS b/c I had re-activation of viral titers for EBV and many other viruses. I tried two anti-virals (Famvir and then Valcyte) but the first I took for 8 mos and it did not help and the second I could not tolerate at any dose so we stopped them. I am unclear if this is a correct diagnosis as I do not have fatigue, PEM, flu-like malaise or fever, pain, brain fog, sore throats etc. But I do have the viral re-activation on all blood tests (IgM positive) so something is messed up in my immune system. In 2014, we discovered that our rental had toxic black mold (stachybotrys) and 19 other kinds of mold through extensive testing. We had been breathing it in through the A/C system for 2-3 years and I feel this is a huge component of my illness. I saw a top mold specialist and we moved to a mold free apt and lost all of our belongings. My inflammation markers like TGF-b1 are off the charts (9400 when top of range is 2300 for example.) I was also exposed to toxins in the bldg where I worked for many years and suspect this also contributed. In April 2015, I started reacting to food dyes, then certain foods, and then by May any food I ingested led to stage two anaphylaxis. I was hospitalized for a week and put on IV Benadryl and later injections. I was able to see an MCAS specialist and now on a protocol of just pills (6-7 meds I take before 30-60 min before eating) but no longer on IV or injections. He diagnosed me with MCAS based on my food reactions and high levels of histamine and prostaglandins in blood tests. I also had PFT's (pulmonary function tests) done while in hospital and with MCAS doc and failed them all. My breathing on four PFT's averages to 70% of normal and considered a "mild" or "moderate" (depending which doctor) restrictive lung/airway disease. I do not have asthma or any constrictive airway disease. When I read about restrictive airway diseases, the information is very overwhelming and scary but it matches the level that I am able to breathe which is quite poor. We tried to do a full lung diffusion test but after 30 minutes of trying, I was not able to do it and got extremely dizzy and short of breath with chest pain and the technician stopped the test (so we have no idea of my total lung capacity, etc.) I had a high resolution lung CT scan by my MCAS doc which came back normal. I am trying to figure out if my low PFT scores could be caused by dysautonomia, MCAS, severe mold exposure and inflammation or some other cause. I consulted with a different cardio a few months ago and he was concerned that my shortness of breath could be muscular and wanted me to have a Sniff Test of the diaphragm. But then he said even if my diaphragm was weak, there is no treatment so I did not pursue it. In general, I do not have muscle weakness except for my right arm which was injured by Levaquin. I know I am leaving out a lot of details and apologize that this is so lengthy! In Feb I will be seeing an autonomic neurologist at Stanford and wish I could go sooner but this is first appt. They cannot do all the autonomic testing b/c I am taking antihistamines for MCAS, atenolol and midodrine but he will examine me and do whatever testing they can. I have not seen a neurologist and feel hopeful about this appt. Midodrine is one of the only medications that helps my breathing (even when it does not raise my BP) but am not sure why. Some docs have proposed that it raises my core BP and brings more blood to my heart and lungs? My questions are: 1) Can dysautonomia lead to failing or not being able to complete a PFT test? 2) Have others on this forum failed these tests? 3) Do people with dysautonomia often have my level of SOB that they require a wheelchair? (I have energy to do things, I just cannot breathe!) 4) Has anyone else been told from a PFT that they have a "restrictive" vs. "constrictive" lung disease? The say "possible" or "probable" since I cannot complete the test. I would love to hear any feedback or guidance and am so happy that I got my log-in to work so I could post all this! Many blessings to all of you.