Situs Inversus Totalis, Bronchiectasi... - PCD Family Suppor...

PCD Family Support Group (UK)

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Situs Inversus Totalis, Bronchiectasis and possible PCD.

SeekingSimplicity
SeekingSimplicity

Greetings Everyone !!!

I am so happy to have found this support group I just cried.

I would like to share my symptoms and see if anyone out there shares the same. I keep on being brushed off my physicians and just feel like a fish outside of water all the time.

I am 37 years old and got diagnosed with Situs Inversus at age 2. I know I had many sinuses infections as a child with constant post nasal drainage (and really bad breath despite dental hygiene OCD). In the military, I got diagnosed with Sports Induced Asthma, go figure.

I have been relatively "healthy" up until about two years ago. I began by feeling quite dizzy and lightheaded very often with several headaches a day. I then began having more and more respiratory infections. Then the neck pain followed and headaches were so constant with the ongoing lightheadedness. I went in for a brain MRI, I was petrified of having a tumor or something since I was a single mum of 3 (one adopted).

By chance I got referred to a pulmonologist who talked to me about PCD for the very first time and then they sent me to the NIH for further examination (I live in the US). So far we have confirmed bronchiectasis and waiting to see if I also have PCD (Dr is quite positive I do).

Anywho, I now have a SERVICE DOG because of the lightheadedness that occurs without warning, especially when I make sudden movements. So bending over to pick up anything causes me to loose balance and fall, or walk into walls, door frames, you name it.

I feel EXHAUSTED all the time. As if I just wanted to sleep for ever, yet sometimes, despite feeling very tired, I feel as if I had just had a gallon of dark coffee and I feel shaky.

I feel as if my vision were to be affected too and my ears DO ANY OF YOU HEAR RINGING ? all the time and as if someone were jabbing an ice peak in them. Then when driving and going through slight hills I feel as if I were taking off on a plane.

So, in sum, the thing I suffer from the most are headaches, lightheadedness and dizziness with nausea, ringing in ear with ear pressure and, according to my husband, hearing loss, shakiness, cough attacks, and BACK PAIN. LOADS AND LOADS OF MASSIVE BACK PAIN !!!!

Thank you all for being there. I feel less alone and less crazy.

4 Replies

Hi there, all this sounds like what I regularly go through (minus the nauseousness). Back pain too, but I never thought that could be related to PCD. I would definitely see a pulmonologist that knows of PCD. A lot of people have many different treatments. Also, if you don’t already, join the PCD groups on Facebook. Everyone asks questions, talks about what they’re going through, and there’s support groups as well!

Hi! Sorry to hear the troubles you're going through and I hope you feel better soon.

The back pain could be caused by your bouts of coughing. They were my reason for back pain, when the coughing became strenuous enough to cause pain in my mid-upper back.

The symptoms of dizziness, lightheadedness, headaches and ringing in your ears sounds like my symptoms I had during fighting the coronavirus.

You most likely have pcd but if I were you I'd get myself checked for Covid-19 as well as check blood pressure, and get blood sample levels of your lipids and thyroid just to exclude those as possible causes.

Good luck!

TerryBun
TerryBunAdministrator

If you’re in the US you might find it useful to get in touch with the US based PCD group at the link below.

pcdfoundation.org

Thank you for your replies !!!

So the back pain began long before the cough attachs, though it does get excaserbated during those opisodes.

I have gotten so many bloos tests and all seem normal with the exception of high Neutrophils and low Lymphocytes. I have no issues with Thyroid either but did get diagnoses with Fibromialgia.

I get COVID tested every time I go into NIH for testing and I always come out negative (thank God), though I am unsure if I got it early 2020 as my pulmonary function decreases significantly from the one before getting sick with "flu like symptoms". This all happened before COVID was a thing here in the US and was told by urgent care doctor how people were getting sick with this "new type of flu".

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