My Introduction And I Really Need Help Re: Shortness Of Breath And Failed Pft Tests!

[Jade123]

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.

[Jade123]

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!

[MomtoGiuliana]

Hi Jade123--Welcome to the forum, glad you were able to get on!

Thanks for sharing your story.

Sometimes I find that people get more answers if they write fairly short posts with only one question at a time.

I've never had a PFT. However shortness of breath was definitely a symptom for me when I had more severe POTS symptoms 12-13 yrs ago--which also for me included severe fatigue and weakness. This has been a topic of discussion in the past many times and you might want to do a search if you haven't for similar discussions.

Hope you get the answers you need soon.

[corina]

Hi Jade123, welcome to DINET! I'm sorry you are having so many problems, hope someone will be able to answer! Re your question on bumping: it's something we normally don't allow but I realize you are very new and had a hard time figuring out how to join us so please don't worry about it!

[Jade123]

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.

[MomtoGiuliana]

Hi Jade123

The "like" feature has been disabled.

If you want to alert someone, the best way may be to send them a personal message. If you place your cursor over their name, you will see a box that says "send message". Click on that to write a message to them personally. Otherwise, the only way they will be alerted will be if they have chosen to "follow the topic".

Active member use of the forum varies a lot from day to day. So see if you get more responses in the next day or so. I believe there are other members here who have had similar symptoms and medical issues that you describe.

[DizzyGirls]

Hi Jade! I too am not computer savvy, so frustrating isn't it! I've had some form of shortness of breath since I was a kid. I was a high energy kid, had bad allergies, but other than not being able to catch my breath, I was healthy. FF 35-40 years and I still have shortness of breath at times, but it seems to be getting worse. My daughter's, most likely husband, and most likely myself all have Ehler's Danlos Syndrome. I don't think I have too much in the way of Dysautonomia, but I do have very low bp and my girls have fairly severe Dysautonomia. Some days I just feel like my throat is going to close off and my chest feels heavy. I had a PFT this past summer and it showed that my small airways were constricted. So we are trying some Flovent inhaler to see if it helps. Has helped in the past, but I'm not sure if it's working very well this time. I have an albuterol inhaler, but it doesn't really work. Tried it the other night, though, in desperation, and I think it did help some, but it gave me these weird lung "cramps" (for lack of a better word). Things that I do don't really affect it. Either I have air or I don't. My allergies do affect it some, so I am trying a few days of Zyrtec to see if it improves. Wonder if something like midodrine would help raise my bp so that my lungs got more blood circulation? Don't know. Anyhow, welcome to the forum!