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Undiagnosed Symptoms Community
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Avatar universal

Mystery illness

Hi! I guess I am just looking for opinions on whether or not I should seek CF testing. I'm sorry this is so long! Thank you in advance to anyone who can offer some advice.

I've been "sick" on and off for a few years now. As a child I had strep throat A LOT until my tonsils were removed. I was also suspected to have asthma. I don't know how it was decided I didn't (I feel like my mother decided that.) I cleared my throat absolutely constantly but to my knowledge this was not investigated. As a preteen I had a heart murmur that apparently went away and had a couple fainting episodes and was diagnosed with syncope.

I was pretty healthy through my teens and the first couple years of my 20s (I'm 27 now).

Three to four years ago I started developing some strange symptoms that have been unexplained. Chest pain and shortness of breath even when sitting still were my first problems. I sometimes feel like I've ran a marathon (basically panting) sitting at my computer. My chest hurts pretty much every day. It hurts to take a deep breath. I get very short of breath from something as simple as walking around despite having been active my whole life until this started. Pretty exercise intolerant. I had a very deep rattle for a month or so when I was 17 that did go away by itself.  More recently (a year or two ago) my doctor treated me with antibiotics for months and months (didn't help) due to a mystery lung infection. I am unable to sleep lying down because I feel smothered and actually slept propped up on my couch for a long time when this first started. I get very dizzy and lightheaded and my heart rate nearly doubles just from standing up. My oxygen levels have not been below 98 and an asthma-type test said I was fine so this hasn't been investigated further though these problems plague me nearly daily. I have heart palpitations and mild mitral valve prolapse. I've also been diagnosed with mild sleep apnea.

I have a lot of digestive issues. I suffer from bouts of what my doctor thinks is gastroparesis. I'm 5'2" and have lost nearly 10 pounds in the last year, from 119 to 109. I haven't weighed this little since before puberty. It started out as vomiting undigested food hours and hours after eating following sulfur burps. That went away for a while but then I started having terrible pain and bloating and an incredible full feeling after eating a small amount of food. It feels like I've swallowed a sack of potatoes and the feeling sometimes lasts up to a whole day. Once I woke up with blood sugar in the 50s because of this before I discovered Ensure. I will sometimes look pregnant after eating a small meal and haven't found any rhyme or reason for it. It hurts very badly. I drink a lot of ensure because I calculated my calories one particularly bad week and realized I could only force down (painfully) about 500 calories of real food a day (this is just when it's bad). I have a terrible time swallowing food and feel that food gets trapped frequently. I do have acid reflux and have stomach erosions and a small hiatal hernia. I also suffer from severe llq abdominal/pelvic pain once every month or two. It lasts between 2 and 12 hours.

Other unexplained symptoms include a chronic low grade fever between 99-99.8 for the past few years (it comes and goes), staph inside my nose, strange neuropathy type symptoms, freezing but sweaty hands and feet (sometimes my toes turn white and numb), and low blood sugar. I also am very "mucousy" and cough and sneeze a lot daily. I have near constant post nasal drip and usually coughing or clearing my throat feels productive. I feel like I have to swallow a lot due to collecting mucus. Hot showers seem to help (if they don't make me super weak and sick first.) I'm extremely fatigued 80% of the time. I'm also (usually) potassium deficient as well as magnesium and vitamin d deficient. My boyfriend is amazing and takes such good care of me. We've been together for five+ years (plus four years as teens) and though we've never tried to become pregnant we haven't tried to avoid it either. I know this could be unrelated but I know fertility is a common issue and we've decided that at least one of us is probably not very fertile. If it's me I guess it could be related.

I was also hospitalized for a couple days this week due to spontaneous pneumomediastinum due to alveolar rupture. The doctor (an older man) said I was only the third case of it he had ever seen. I have slightly suspected CF for a while now, but after doing a little research and reading that CF can cause pneumomediastinum I decided to post here and gather some opinions.

Again, I really want to thank anyone who can offer some insight. The doctor I saw at the hospital referred me to a pulmonologist. My appointment is in two weeks. I'm also seeing my primary care around that time. Should I mention CF? I'm so sick of being sick and I'm desperate for answers. I told my therapist any diagnosis would feel relieving...I just want to know what's going on!
1 Responses
Avatar universal
If you had cystic fibrosis you should have known by now. It is a nasty disease demanding hospitalization sometimes, and constant treatment to stay ''healthy'' You might have an unresolved pulmonary infection. I doubt it could be turbeculosis but you need to be checked if not vaccinated properly. Chlamydia  pneumoniae is an other sneaky infection that can give symptoms like yours and it is quite dangerous although i doubt if all these were the case you would get a good spirometry as you mentioned. Something you need to do for sure is to ask your doctor to run a battery of tests concerning your thyroid function. There might something going on there like hypothyroidism or Hashimoto's thyroiditis. Many of your symptoms show thyroid disease.
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