Help me please!!!

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Naomi RainbowBrite Malone

New member
So when i was probably around 6/7 i was told that I was borderline CF. I'm now 17, my pediatric doctor tells me she doesn't believe I have it, but she is mainly going off the basis that I am 5'4 and 160 lbs classified as overweight. Lately I've been getting sick a lot. I cough up mucus almost every day, have become lactose intolerant, I have low blood sugar, very low energy, and I tend to get obstructed bowel movements a lot(sorry if that grosses you out to know). Do I have CF? Should I go get tested again? Also I tend to pass out when i get stuck with needles and i have very bad short-term memory loss that is progressively getting worse(not sure if those are signs of CF or something else).
 
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mroberson5

New member
Request a sweat test from your doctor. That is probably the best way to go, if neither one of your parents haven't been tested for the CF gene. You can also look up CF clinics in your area, and maybe contact one of their doctors and ask them about it. Your doctor should have ordered a sweat test if you were already told you might have it. Sorry I am not a doctor so I can't give you much! Good luck, and let us know what you end up doing/learning!
 
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Aboveallislove

Super Moderator
If you were "borderline" CF then I'm assuming that was from a sweat test at 6ish. I'd say call a CF Center for an appointment and request a full gene sequencing as well as the sweat test. You have enough symptoms to warrant, especially with borderline. And not every CFer has an issue with food absorption.
 
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Naomi RainbowBrite Malone

New member
Yes i think it was a sweat test, I remember going to the hospital and they put this thing on my arm. I remember it hurting, like shocking kind of. Then they put like a little cast on my arm and they cut it off a little while later that same day. Do they do CF testing at most hospitals or do you need to go a specialized CF center?
 
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Kimmiegirl

New member
I believe most hospitals do sweat testing, Try and find a CF center near you, and get the genes sequenced, If you carry 2 copies of a CF gene you have it. I would try to go to a CF center if possible they understand Cf much better than an average Dr. Good luck to you.
 
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Aboveallislove

Super Moderator
I would do it at a speciliazed CF Center. Other places MAY be able to (not sure--likely not many), but it is specialized and you want someone who is well trained in doing it. Also, you really want to have a full gene mutation run and other places won't know how to go about doing that. You can find centers at the CFF.org web page. Let me know if you need help figuring that out (and then the closest big cities). hugs
 
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Naomi RainbowBrite Malone

New member
lol thank you so much! I should be going to the doctors soon and i'm going to ask them about it, and if they are unable to do a full gene mutation run i'm just going to go get it done at a place that specializes in CF :)
 
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Aboveallislove

Super Moderator
Make sure you ask for a "full" gene sequencing. Typical blood test at lab is 5 genes. Some might think to do an extended of 250 gene possibilities, but there are over 1500 I believe, so you want a full sequencing. The local dr might not know and thus the need may be to go to CF center. Given you're older, it is more likely you'd have a rarer mutation.
 
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Printer

Active member
DO NOT have your local Doctor do a sweat test. Go to an APPROVED CF CLINIC and see a CF SPECIALIST. YES I believe that you do have CF

Bill
 
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MichaelL

New member
My CF doesn't show up with a sweat test. I was diagnosed -- by genetic testing -- at the age of 34. I was having a lot of lung infections and heavy sputum.

I am pancreatic sufficient. I don't need to take enzymes and I have no problem keeping weight on. I don't remember the exact number, but a minority of people with CF are pancreatic sufficient. Your doctor who said you can't have CF based on your weight is probably not familiar with the many variations of the disease.

Similar to the comments above, I would encourage you to go to a CF centre and get a genetic test. It sounds to me like you have a less common form of CF.

Good luck!
 
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CookieMonsterKayla

New member
You dont have it. if you did you would be dead now do to no treatments. I found out i had cf when i was 2 months old and im still really messed up from it..
 
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RytheStunner

Guest
CookieMonsterKayla said:
You dont have it. if you did you would be dead now do to no treatments. I found out i had cf when i was 2 months old and im still really messed up from it..
Click to expand...

That's not even remotely true. There are several people who are not diagnosed with CF until adulthood because they don't exhibit any symptoms and were never tested.
 
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welshwitch

Guest
I'm with the genetic sequencing. As you see here, a lot of people "pass" the sweat test only to be diagnosed later in life with CF via genetic testing. It would explain your symptoms, and most importantly you would get TREATMENT!
 
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JustDucky

New member
I was diagnosed at 33, but amazingly, there were doctors who said that I looked too good to be a CF;er and that I should be at death;s door during my diagnosis phase. Doctors said this. I am still shaking my head! But please do go to to a center for diagnosis, there are well over 1500 mutations of CF, some of them aren't as severe as what you are probably used to hearing about (very skinny infants/kids, coughing their lungs out, sick alot etc). I am definitely not in that category, I am actually a bit overweight (but still considered mildly pancreatic insufficient), had infections as a kid that lingered, but nothing serious until my 20's, borderline sweat tests but the genetics and presentation says CF. It just goes to show that CF presents in various ways, even for those who have the most severe mutations.It is not a one size fits all type of disease.
Good luck, keep in touch!

Jenn 40 wCF
 
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Marina Louise Oneill

New member
at first my daughters center said she had a cystic fibroisis metabolic syrdrome now they are telling me she has cf her sweat test comes up negative she had a failure to thrive. she was born with the delta f508 and the rh117 she is pancreatic sufficent for now. i would agree with everyone else go get a sweat test done and a genetic screen done
 
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