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Thread: CF symptoms: Can it be CF or am I crazy?

  1. #1

    CF symptoms: Can it be CF or am I crazy?

    I never associated CF with my symptoms but my son has been diagnosed as CRMS/PI and that made me questioned some symptoms that I have been having for years.
    So please tell me: are these valid CF symptoms or maybe simply I am a carrier or just plain psycho.
    I am not too concerned about myself (I am 43) but my son is in a grey area, if I were to have something related to CF that would help us treat him better - right now he is only treated with enzymes and flovent.
    I grew up very normally, very healthy childhood.
    Lung problems: at 18 I started to experience my first episodes of shortness of breath, with urban pollution in winter. Every year it would get worse and worse, and then it was not only in winter. Triggers are also: some chemicals, some perfumes, dust, outdoor molds, cats, cat pee, anesthesia meds. I used to be a chemist (terrible choice, did not help), I had to switch career. The episodes are always the same thing: terrible shortness of breath. I cough mucus here and there but not all the time.
    I always have hyperinflation of the lungs on X-ray, I have had scarring of the lungs as well in the past on a CT scan. Albuterol has no effect on me. The only thing that work are steroids, I have been on prednisone bursts several times in the past. No doctor ever suggested CF. I was diagnosed as having "reactive airways"...
    Nose: always 'yellow stuff' up there and I tend to have sinusitis at times.
    Digestive problems: at 30 I started to have very painful episodes of stomach pain (upper abdomen), followed by acid going up my throat to my mouth to the point it feels like I have a toothace. Bloatting and gas as well with the episodes. The pain is the worst thing, it can be very strong at times, I'll be rolling on the floor. I take pain medication, episodes will recede, than come back the next day but less bad.
    I had an endoscopy and a colonoscopy that showed absolutely nothing. I also have floatting stools, all the time - a doctor told me it was air... And constipation used to be the norm for me, laxatives and Miralax became my friends until very recently when I discovered a new probiotic that has really helped me become regular (my son as well). I recently asked to have a fecal elastase test, this was normal.
    I have seen countless lung and GI doctors over the years, yes some have suggested that I go see a psychiatrist. Which is why I am very relunctant to even suggest I be tested for a simple sweat test - I don't even have a primary MD right now, looking for a good one.
    Any thoughts?

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  2. #2

    CF symptoms: Can it be CF or am I crazy?

    Hi,

    It looks like nobody really has an answer, but I didn't want you to not get any response. It's difficult to know about something like this. Your symptoms don't necessarily sound classic for cf, but it's a weird disease which doesn't always manifest itself in the same way.

    Periodic episodes of shortness of breath (which I'm assuming goes away untreated?) is really not a symptom of cf, although the scarring seems odd.

    A lot of mucus--definitely a symptom! Most commonly green is the problematic color, but that's a result of bacterial infection and wouldn't necessarily have to be the case.

    As far as the digestive issues, reflux certainly is a common problem with cf, but the primary issue is pancreatic insufficiency. I believe reflux can be from a lot of causes. The floating stools are more suspect, but you said the test was normal, right?

    It sounds to me like you need to find a good doctor you can trust and just talk it over with him. Your symptoms wouldn't make me quickly think you have cf, but that doesn't mean it's not something you might want to look into. Obviously there are some things going on that need to be addressed, and a good doctor should be able to help you sort through all of the varying symptoms. I hope you're able to find answers soon!

    Jana

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  3. #3

    CF symptoms: Can it be CF or am I crazy?

    I smiled reading your post because I had just asked our son's CF doctor how I would go about getting tested and she looked at me like I was crazy. But my husband has said the same that I should get test--I have really thick mucus which I have a hard time getting out and it often makes me vomit when I try. Major digestive issues. And some aquatic wrinkling that seems more than "normal." And I like to eat salt by the spoonful. Frankly, I think it's just being a carrier, but will I figured it can't hurt to make sure with a sweat test and will talk with GP next physical. Long way of saying, you aren't crazy--yeah, maybe some depression/anxiety shows through physical signs, but there are also real physical things that might just not be CF/could be b/c you are a carrier. But it definitely sounds like acid reflux which should be controlable so maybe find a new doctor that can help with that.


    Also, would you mind sharing your probiotic info? DS and me both have major issues and would like to maybe try something new after running by his GI???

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  4. #4

    CF symptoms: Can it be CF or am I crazy?

    Sanfloraine and Aboveallislove:

    Both of you are showing sufficent symptoms to justify further examination. Trust me, as ADULTS we do not so the same symptoms as children. Your dx therefore will be different.

    If it is required by your insurance, get a referal from your PCP and go to an APPROVED ADULT CF CLINIC and see a ADULT CF SPECIALIST. Try to have a FULL CF SEQUENCING done. This is not something that can or should be handled by your PCP.

    Bill

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  5. #5

    CF symptoms: Can it be CF or am I crazy?

    Thanks Bill. That's what I thought too. I'm going to do a Sweat Test first at the Adult CF Clinic--our son's CF doctor said I need to get referral from my GP, but I'll defnitely get at the Adult CF Clinic (it's one of the top in the country), and then from there the FULL CF sequencing, b/c if I have it would be a rare mutations, I'm sure since I had the basic ones done after son's birth. Thanks again!

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  6. #6
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    CF symptoms: Can it be CF or am I crazy?

    I have a different story, but definately recommend you both get tested. My daughter is in CF diagnostic limbo for more than 1 1/2 years. I am very thankful that she has the most wonderful doctor who treats her for CF and the treatments work (Hypersal, anitbiotics including IV, vest for mucus clearance). Her FEV1 increased from 55% to 100% after 11 years of incorrect asthma treatment. The insurance company is difficult to work with without a diagnosis and since my daughter with symptoms has 1 CF gene and my other child the 5T variant I wanted to get my symptomatic child's genetics redone by Ambry. So I had my genetics done by Ambry trying to prove her result was not possible. It did not work out that way and instead I found out it was me that has both the CF gene and 5T variant. It explains my symptoms which seem so mild compared to most here. I have been to the adult CF clinic and the doctor does believe I have Non-classic CF/ Variant CF/ Atypical CF depending on which term the doctor prefers. I was in complete shock at my test result. You never know and just 2 weeks on the Hypertonic saline and I have more energy, sleep better, breath easier, etc etc etc. I found out the sinus antiobiotic I have been on for an extended time also combats PA. So no you are not crazy to wonder about yourselves.

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  7. #7

    CF symptoms: Can it be CF or am I crazy?

    Basic test is usually 30 mutations. When I was first tested in the late 90's, I tested positive for Delta F508. My second test was done in 2011 (a full cf sequencing) where the found the second mutation. Even if the sweat test is negative, push for the Full Sequencing.

    Bill

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  8. #8

    CF symptoms: Can it be CF or am I crazy?

    Beccamom:

    My Doctors and I believe that my dad had CF. He fathered 4 children so his case would be "mild". He was, however. hospitalized on 3 occasions for TB (we believe to be a mis-dx). We therefore believe that the V562I, T5, mutation came from him and the Delta F508 from my Mom. The V562I is very rare.

    My point is, obviously, my dad had 2 milder mutations and even today would not likely dx without a FULL CF SEQUENCING.

    Keep pushing and get the FULL SEQUENCING for you and your kids.

    Bill


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  9. #9

    CF symptoms: Can it be CF or am I crazy?

    National Jewish Health in Denver CO has an outpatient program where they evaluate patients like you. They say it can take up to two weeks.

    I had lung problems for decades and developed Bronchiectasis. I went to numerous specialists who were listed as "Best Doctors" at some of the top hospitals in New York. Since my sweat test results were always, none of them suggested Cystic Fibrosis. One did perform some limited genetic testing.

    Prior to having lung surgery because of increased bleeding, I went to National Jewish in Denver for a consultation. For me, the evaluation took a week. Their testing was quite extensive and included expanded genetic testing. As a result of the genetic testing, a diagnosis of CF was made.

    Just goes to show that no doctor knows everything, and that sometimes second, third, ... ninth opinions can be very worthwhile!

    As other people have said, a CF diagnosis later in life can be very beneficial. The diagnosis opens the door to a protocol for treating CF. For me, it was a real life changer thank G-d.

    PS: I responded so well to the CF treatment protocol, that I never did get the lung surgery and have had only two minor bleeding episodes in the past six years since the diagnosis.

    Don't give up! Wishing you all the best.

    Stephen
    70 y/o with CF and Bronchiectasis

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  10. #10

    CF symptoms: Can it be CF or am I crazy?

    Great story Steve. Good for you.

    Bill

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