usually they will do a sweat test first as that tends to be seen as the "gold standard" for diagnosis. This can be frustrating for those being tested, however, because as you will come to find out there are a fair amount of people on this board that had negative or borderline sweat tests but were diagnosed with CF through genetic testing. It can be difficult to get the full genetic sequencing sometimes (they are expensive tests and insurance doesn't always love it!) but it's definitely worth pushing for especially if your sweat test is borderline or positive. It sounds like the doctor you're seeing is probably an excellent pulmonologist but may not be one that specializes in CF. according to the CFF website Dr. Brian Morrissey and Dr. Carroll Cross are the two directors of the Adult CF clinic as UC Davis. Is probably worth pushing to get an appointment with one of them if you continue to have troubles after your sweat test results come back. good luck!
Adults and older CF patients regarding the CF centers and getting diagnoised.
M
madmax33
Guest
Thank you for the reply. It is very interesting finding all this out. I knew Brian Morrissey is the Director. I thought at first this was who I was seeing. I wonder how many of the Drs are Certified in CF there? I called there this morning and I am trying to push for the full Genetic test also when I go back Tuesday. It is a long shot, but Would save a lot of time. Yes it is very concerning seeing people have had low or neg sweat test and eventually diagnosed. I am so worn out and sick and been fighting for so many yrs, I don't feel like I have more yrs left to pursue what is going on with me. It is hard. I am dealing with Such SOB and fatigue beyond what I can even explain. I have to much going on and it is not being addressed up where I live. Just so frustrating.
M
madmax33
Guest
I also had listed my symptom's and other test I have had wondering if this is CF related. Never got no response on that yet. If this is Cf and without treatment it is scary. I have read so much about these bacteria's and the aggressive treatments they do for them. with all my infections and sinus problems and coughing up flame, All I have been giving is antibiotics over and over again. In 2011 I was on 8 different antibiotics for bronchitis and nothing would touch it. Back then I felt it was MIRSA. Having Chronic Asthma and Chronic Bronchitis most my life, I just have not got much care with it. No Doctor has ever taken the time to find out what I have and why the antibiotics are not working. I had a positive MIRSA in my nose yrs ago, and that worried me being Considered Chronically ill. I was told not to worry about it, everyone has it. I made many calls back then, where common sense told me, if you have your sinus's draining and and lung problems , this is not good. One nurse told me it was a issue and if I ended up with ammonia I would be in trouble. recently that is just what I was diagnosed with at my last Ambulance ride to ER. I have that, pleurisy, two partial collapsed lungs and a plural effusion. I feel I am in trouble.
madmax:
The Director of the UC Davis Adult Center is Brian Morrissey, MD. His associate is Carroll Cross, MD. The phone number for an appointment is (916) 734-3728.
I have a feel for what you are going through as I was dx at age 47. My PCP wouldn't admit that I had Cystic Fibrosis, he called it Cystic Fibrosis Syndrome
Bill.
The Director of the UC Davis Adult Center is Brian Morrissey, MD. His associate is Carroll Cross, MD. The phone number for an appointment is (916) 734-3728.
I have a feel for what you are going through as I was dx at age 47. My PCP wouldn't admit that I had Cystic Fibrosis, he called it Cystic Fibrosis Syndrome
Bill.
K
kgfrompa
Guest
I was 50 when i was diagnosed with CF my Doctor said he about fell off the chair when he read the results I was in and out of the hospital with Cronic Asthma Bronchitis and have plerisy Over and over i get a infection and the humid weather is the worst for me I was happy to have a neame on my condition as seeking answers went on and on I had 19 chest tubes and most of my Left lung removed so for me it was a blessing to find out what was wrong with me even if i was 50 I am 58 now
M
madmax33
Guest
Hi Bill. Thank you for the info on the Director at UC Davis. I already had that info. Also on your recent post, referring to you are not wrong!!!! I am not sure in what that is in reference to, other then a post of your where wrong regarding CF Centers and the DRs. I think this has blown out of proportion. .(that person is referring to you being wrong telling me, No CF Doctor would tell me this) That is what you where wrong about, As he did tell me this. No one is saying you are wrong about finding out who you are seeing. So again just to explain, I am new to this trying to get diagnosed. I was only told to make sure I get to a Credible CF CENTER. I did and then made a comment of what the Dr had said to me. It was your reply, Which came back and told me NO CF Doctor would say that. Ok. Well it is quite obvious of what I have learned from others here on the board, It does matter who you see. You need to understand here, when finally being referred and My referral said I was seeing Brain, (And that is not who I did see) I was glad just to finally have a appointment. No one even explained to me through this process, the Screening test is different then the actually sweet test the CF Center does. When I talked with the Head nurse there a month ago, She asked my results and I told her it was 90 and she said" Oh yes that is a positive" I have never been able to talk with anyone down there on the phone since. I only asked a question here, regarding the Drs statement I was way to old to have this. "Very Unlikely" Ok. Who would ever think it makes a difference in the CF Center and the Dr you see of one knowing it is possible and one saying you are to old. I just did not expect that there and I don't think many older patients would ever expect that either. When you are not familiar with how this works, and how seems the older you are the harder it is to even convience a dr to refer you. Sure is almost impossible where I Live. I sure do not feel it was appropriate to start listing a Drs name on a board and slam him. I am happy with him, he was very concerned with me and stated he would do all he can to help me. As you see from other post, this has happened to others also. Like I said I am set up for the sweat test and have found out a lot of good info on this board. Reason why I came here for some help. I just wanted some help and what to expect and from others who have Been diagnosed. I am sure if the test comes out positive the Dr then would look at it very differently. I also have learned not all CF Centers are treated equal or the care. SO it is a lot to take in. The CF center I am dealing with is very hard to get a hold of also, or a actually person on the phone. I have sat on the phone for up to 40 minute's, left messages, asked for call backs regarding faxing records and so forth and for the past 3 weeks no one has called back. So that is a issue. Things are very hard for me right now Bill, as I do not have the energy and wiped out. I am not doing good. Just need to see how things go. I really am feeling that this center probably does not have any Adult CF patients past 35 or maybe 40 yrs old. I do not know. I agree with you, that you should know who you are seeing. Getting to the CF Center you would think that is enough. They should all be qualified to oversee your care.
M
madmax33
Guest
Thank you for your reply. So sorry you have been through so much. I see much of the same with a lot of the later in life CF patients, have gone through so much of the chronic stuff all there life without a diagnose or treatment. Makes a difference to put a name on a disease you have so you finally know why you have not felt well most of your life.
LittleLab4CF
Super Moderator
FYI: Not all “approved” CF centers have CFF accreditation. Medical schools tend to make their own rules and many have self-accredited clinics of all kinds including CF.
Late diagnosed CFer's are crawling out of the woodwork. In the recent past, ER visits for pancreatitis diagnosed 170,000 with CF, through genetic testing. It appears that late diagnosis of CF is about to become the majority. Not to worry, I think CRMS or Cystic fibrosis Related Metabolic Syndrome will take most of this population.
My CF diagnosis came on the heels of a record case of pancreatitis. A pancreatologist/CFGI doctor familiar to many adult CFers, Dr. Steven D. freedman suspected CF and ordered a sweat chloride test at Boston Children's Hospital. Before the test even started, they objected because there wasn't a test data table for a person my age (then 52). With the resources of Harvard's medical school library, a workable table was assembled within a few hours. A repeat test was higher yet and with my health issues, I was diagnosed on the basis of the sweat chloride test. If I remember correctly, Boston Children’s and Harvard planned to do a formal study to establish adult test numbers. In either case, adults now have an age table.
As for being marginalized by a CF specialist doubting someone 59 would have CF, the remark is insensitive but statistically valid. Having a positive sweat test discounted is both insensitive and statistically wrong. This is why Printer and others are a bit incredulous that a CF specialist at an approved CF center would take such wild swings. As great as CFF is, the focus changed about five years back. Instead of the traditional financial aid for CF families, they dove head on to find a cure. Advanced genetic testing and our knowledge of cell genetics technology was ripe for the attempt. It was worth every penny of the now hundreds of millions of research dollars.
Undoubtedly your doctor was relying on statistics when he/she told you weren’t a likely candidate for CF. The list of conditions that would also cause a positive sweat test is exactly? Exactly, any condition that will cause a false positive for CF might as well be CF. life threatening electrolyte imbalance, pancreatitis (chicken or egg?) and other issues involving clogged hyperactive endocrine glands like the adrenals, thyroid and such. If your heart isn’t jumping out of your chest, chances are, it is CF. There is no subtle condition that could show 90 on a sweat test.
The sweat test is still the Gold Standard because it directly measures the chloride imbalance present in a particular type of sweat gland found in the skin and moist mucosa lining the oral and nasal cavities, the gut and all glands or gland-organs like the pancreas and thyroid.
The same Dr. Freedman has been racking up CF diagnoses from a very significant number of adult idiopathic chronic pancreatitis patients. Such was my case once the sweat chloride test was confirmed. Then genetic testing revealed a mutation known to cause pancreatic/abdominal havoc in single copies.
The world of CF is a tiny place and in the rarified air of an Orphan Disease, the average doctor doesn’t have CF medicine on the tip of her/his tongue. A number of contributors have regaled us with questions from medical professionals like “at what age did you contract CF?”
Genetic testing is refined to the point where any and all mutations are identifiable. Mammalian genetics is confounding by nature. Cystic Fibrosis is a single gene, mammalian genetic disease, something truly rare. There are a couple thousand variants of this mutation and the clean Mendelian genetics has failed to hold true. All of the wild variations in CF that weren’t necessarily predicted could explain a great deal about late diagnosed CFers.
Classic CF carriers, those who only carry one mutation and no other errors like long T polymorphisms, are said to have mild versions of certain CF issues in some cases. Sinus and head infections, frequent but treatable chest infections but almost always CF issues of the pancreas and gut.
By contacting CFF.org you will find a nearby Cystic Fibrosis Foundation chapter either by State or region. I suggest calling the chapter representative closest to you. I go to the Adult CF Clinic at National Jewish Health (NJH) a leading respiratory center. Here’s the rub. Late diagnosed CFer’s represent a fast growing population and most of us have been winging it with regular specialists having no focus on CF. An adult GI doctor who is current on CF isn’t going to be found at every approved CF center.
In fact the Cystic Fibrosis Foundation is quick to admit that they are scrambling to establish top notch Adult CF clinics. I recently contacted the Colorado CFF chapter looking for an adult CF GI specialist. The person I talked with told me I was already seeing the regional go-to guy. She remarked that everybody was scrambling to build up Adult CF resources.
Not all doctors are extraordinary and not all doctor-patient relationship meshes perfectly. Most CF specialists have been on a steep learning curve concerning CF genetics. Three years ago CF was KNOWN to be an autosomal recessive disorder requiring two copies of the same CFTR mutations. Otherwise, you were an asymptomatic carrier. I am pretty good in genetics and appreciate how this certainty was likely to be blown away.
It is especially frustrating when a doctor begins by making you sound like a fool. I understand why doctors gleefully tell you what you don’t have. And I understand how infuriating it can be when clearly you need an answer to what you DO have. Adult CFers may live in Dallas but come to Denver or live in California and the go to Boston. If local resources aren’t up to snuff, contact the Cystic Fibrosis Foundation and complain.
Welcome to the club,
LL
Late diagnosed CFer's are crawling out of the woodwork. In the recent past, ER visits for pancreatitis diagnosed 170,000 with CF, through genetic testing. It appears that late diagnosis of CF is about to become the majority. Not to worry, I think CRMS or Cystic fibrosis Related Metabolic Syndrome will take most of this population.
My CF diagnosis came on the heels of a record case of pancreatitis. A pancreatologist/CFGI doctor familiar to many adult CFers, Dr. Steven D. freedman suspected CF and ordered a sweat chloride test at Boston Children's Hospital. Before the test even started, they objected because there wasn't a test data table for a person my age (then 52). With the resources of Harvard's medical school library, a workable table was assembled within a few hours. A repeat test was higher yet and with my health issues, I was diagnosed on the basis of the sweat chloride test. If I remember correctly, Boston Children’s and Harvard planned to do a formal study to establish adult test numbers. In either case, adults now have an age table.
As for being marginalized by a CF specialist doubting someone 59 would have CF, the remark is insensitive but statistically valid. Having a positive sweat test discounted is both insensitive and statistically wrong. This is why Printer and others are a bit incredulous that a CF specialist at an approved CF center would take such wild swings. As great as CFF is, the focus changed about five years back. Instead of the traditional financial aid for CF families, they dove head on to find a cure. Advanced genetic testing and our knowledge of cell genetics technology was ripe for the attempt. It was worth every penny of the now hundreds of millions of research dollars.
Undoubtedly your doctor was relying on statistics when he/she told you weren’t a likely candidate for CF. The list of conditions that would also cause a positive sweat test is exactly? Exactly, any condition that will cause a false positive for CF might as well be CF. life threatening electrolyte imbalance, pancreatitis (chicken or egg?) and other issues involving clogged hyperactive endocrine glands like the adrenals, thyroid and such. If your heart isn’t jumping out of your chest, chances are, it is CF. There is no subtle condition that could show 90 on a sweat test.
The sweat test is still the Gold Standard because it directly measures the chloride imbalance present in a particular type of sweat gland found in the skin and moist mucosa lining the oral and nasal cavities, the gut and all glands or gland-organs like the pancreas and thyroid.
The same Dr. Freedman has been racking up CF diagnoses from a very significant number of adult idiopathic chronic pancreatitis patients. Such was my case once the sweat chloride test was confirmed. Then genetic testing revealed a mutation known to cause pancreatic/abdominal havoc in single copies.
The world of CF is a tiny place and in the rarified air of an Orphan Disease, the average doctor doesn’t have CF medicine on the tip of her/his tongue. A number of contributors have regaled us with questions from medical professionals like “at what age did you contract CF?”
Genetic testing is refined to the point where any and all mutations are identifiable. Mammalian genetics is confounding by nature. Cystic Fibrosis is a single gene, mammalian genetic disease, something truly rare. There are a couple thousand variants of this mutation and the clean Mendelian genetics has failed to hold true. All of the wild variations in CF that weren’t necessarily predicted could explain a great deal about late diagnosed CFers.
Classic CF carriers, those who only carry one mutation and no other errors like long T polymorphisms, are said to have mild versions of certain CF issues in some cases. Sinus and head infections, frequent but treatable chest infections but almost always CF issues of the pancreas and gut.
By contacting CFF.org you will find a nearby Cystic Fibrosis Foundation chapter either by State or region. I suggest calling the chapter representative closest to you. I go to the Adult CF Clinic at National Jewish Health (NJH) a leading respiratory center. Here’s the rub. Late diagnosed CFer’s represent a fast growing population and most of us have been winging it with regular specialists having no focus on CF. An adult GI doctor who is current on CF isn’t going to be found at every approved CF center.
In fact the Cystic Fibrosis Foundation is quick to admit that they are scrambling to establish top notch Adult CF clinics. I recently contacted the Colorado CFF chapter looking for an adult CF GI specialist. The person I talked with told me I was already seeing the regional go-to guy. She remarked that everybody was scrambling to build up Adult CF resources.
Not all doctors are extraordinary and not all doctor-patient relationship meshes perfectly. Most CF specialists have been on a steep learning curve concerning CF genetics. Three years ago CF was KNOWN to be an autosomal recessive disorder requiring two copies of the same CFTR mutations. Otherwise, you were an asymptomatic carrier. I am pretty good in genetics and appreciate how this certainty was likely to be blown away.
It is especially frustrating when a doctor begins by making you sound like a fool. I understand why doctors gleefully tell you what you don’t have. And I understand how infuriating it can be when clearly you need an answer to what you DO have. Adult CFers may live in Dallas but come to Denver or live in California and the go to Boston. If local resources aren’t up to snuff, contact the Cystic Fibrosis Foundation and complain.
Welcome to the club,
LL
M
madmax33
Guest
Thank you so much for reply. I will read it a little later and reply. I have some questions which I keep posting here about the sweat test I had. Ok Please clarify this. The CF Center told me to call a hospital in the area I live and see if I could get a test here because of the travel time. They said then I could get a referral if it came out positive. SO I did. Mercy.
Mercy called this a sweat test. (I do not know the difference from a screening test and a Sweat the CF Centers do.) This test at Mercy was done with a machine. Electrodes put on your arm. Put liquid in the one cap. Set it for about 5 minutes, take it off and then clean it, which the tech told me to make sure there is no contamination. Then they put it back on and you sit for about 30 more minutes. So this is the test I had. It came out to 90. Marked at Positive and high. It states on the test, any test over 50 should be referred to a CF Center. So even being that I had this test, and the CF Centers always do there own to diagnose anyone, What I don't understand is why again this Dr would even say this, not only with my history, but with this test at 90 and they instructed me to get one done here first if I could. So my question on a screening test. Do most CF Centers or the doctors disregarded this test?
I am wondering if I am missing something here or if this is not a diagnostic test, what the heck would they have told me to get one done for in the first place. So if there is a difference in the test, maybe this is why the Dr said this, until they have there own test?? Help me here. I was disappointed, not what I expected at all getting this far. Doing what they are telling me to do. So if the testing is why the dr swayed that way, or is he just being insensitive? I want to know if maybe this is where I confussion is and not a CF CENTER Sweat test. Thank you
Mercy called this a sweat test. (I do not know the difference from a screening test and a Sweat the CF Centers do.) This test at Mercy was done with a machine. Electrodes put on your arm. Put liquid in the one cap. Set it for about 5 minutes, take it off and then clean it, which the tech told me to make sure there is no contamination. Then they put it back on and you sit for about 30 more minutes. So this is the test I had. It came out to 90. Marked at Positive and high. It states on the test, any test over 50 should be referred to a CF Center. So even being that I had this test, and the CF Centers always do there own to diagnose anyone, What I don't understand is why again this Dr would even say this, not only with my history, but with this test at 90 and they instructed me to get one done here first if I could. So my question on a screening test. Do most CF Centers or the doctors disregarded this test?
I am wondering if I am missing something here or if this is not a diagnostic test, what the heck would they have told me to get one done for in the first place. So if there is a difference in the test, maybe this is why the Dr said this, until they have there own test?? Help me here. I was disappointed, not what I expected at all getting this far. Doing what they are telling me to do. So if the testing is why the dr swayed that way, or is he just being insensitive? I want to know if maybe this is where I confussion is and not a CF CENTER Sweat test. Thank you
M
madmax33
Guest
Also the test I had done at mercy is a Sweat Conductivity test. The CF center likes to do there own. So I guess they are different in how they do them.
Your post is very interesting and very informative. You have gave me so much knowledge. Learning something all the time. I appreciate all the time you took informing me. And everyone Else on this board who have responded to me. ALL Thank you so much.
Just a note, the CF Center finally called back, and I got the Dr to also Order the Full Genetic panel. This makes me feel so much better seeing so many older CFers have had low or neg sweat test but later found to have mutations. I have been fighting for yrs so This is great! (FART)
Your post is very interesting and very informative. You have gave me so much knowledge. Learning something all the time. I appreciate all the time you took informing me. And everyone Else on this board who have responded to me. ALL Thank you so much.
Just a note, the CF Center finally called back, and I got the Dr to also Order the Full Genetic panel. This makes me feel so much better seeing so many older CFers have had low or neg sweat test but later found to have mutations. I have been fighting for yrs so This is great! (FART)
M
madmax33
Guest
Ty so much. Yes at least I am getting it all done in the one trip instead of just waiting on the sweat. It is a drive also so I am very pleased. I feel this will tell me finally. 
W
welshwitch
Guest
Great news on the full genetic panel! Hope you get some answers soon.
LittleLab4CF
Super Moderator
Yes you had the same sweat test everyone has been referring to. You've been battling health issues most of your life, CF diagnosis or not. CF itself is an acronym for a genetic disease full of acronyms and "sweat test" is just shorthand. The sweat chloride conductance test is not necessarily done with the patient present. All the cleaning, and then waiting 30 minutes with a mild electric current passing across a special gause bandage is to gather sweat for testing. The sweat is tested in the lab. Considering how simple the test is, in fact, it won't surprise me if a wearable tester is soon available.
The number '90' and the advice for anybody who has a value above 50 seeing a CF center is typical of how the test reads. Something like 0-30 is normal, 30-60 is marginal and above 60 is CF. A value near 90 is close to the maximum for practical purposes.
To put the test in perspective the mid range sweat from a positive test (~70) is THREE TIMES as concentrated as the sweat of a mid range normal subject. Your correct about the finicky attitude when it comes to trusting a sweat chloride test not done by "them". There's some justification, but it sounds like the test was properly done.
Be prepared to find out that genetic testing diagnosis is a moving target. The knowledge about CF genetics has doubled about every two years since 1989. Sweat chloride tests are particularly accurate in diagnosing pancreatic CF and abdominal CF. Genetic testing for CF is accurate but mammalian genetics tends to have backup genes and other anomalies that can mitigate what should be the worst mutation set. Nature verses nature and undoubtedly other unknown genetics can make for the worst possible CF.
Late diagnosed CFers don't see many other CFers. For a short period the adult CF clinic where I go, stuck all CFers in a fairly small waiting room. Most "adults" were barely adults with their parents figuring my adult kid was in the clinic. Scared necks and chests belied the young innocent faces of some. The spectrum of what defines CF is difficult and necessary. It is important that we acknowledge the reality of CF that is going to require multiple organ transplants, the infants who fail to thrive and those who are able to live relatively normal lives.
Keep us informed about your genetic testing.
LL
The number '90' and the advice for anybody who has a value above 50 seeing a CF center is typical of how the test reads. Something like 0-30 is normal, 30-60 is marginal and above 60 is CF. A value near 90 is close to the maximum for practical purposes.
To put the test in perspective the mid range sweat from a positive test (~70) is THREE TIMES as concentrated as the sweat of a mid range normal subject. Your correct about the finicky attitude when it comes to trusting a sweat chloride test not done by "them". There's some justification, but it sounds like the test was properly done.
Be prepared to find out that genetic testing diagnosis is a moving target. The knowledge about CF genetics has doubled about every two years since 1989. Sweat chloride tests are particularly accurate in diagnosing pancreatic CF and abdominal CF. Genetic testing for CF is accurate but mammalian genetics tends to have backup genes and other anomalies that can mitigate what should be the worst mutation set. Nature verses nature and undoubtedly other unknown genetics can make for the worst possible CF.
Late diagnosed CFers don't see many other CFers. For a short period the adult CF clinic where I go, stuck all CFers in a fairly small waiting room. Most "adults" were barely adults with their parents figuring my adult kid was in the clinic. Scared necks and chests belied the young innocent faces of some. The spectrum of what defines CF is difficult and necessary. It is important that we acknowledge the reality of CF that is going to require multiple organ transplants, the infants who fail to thrive and those who are able to live relatively normal lives.
Keep us informed about your genetic testing.
LL
M
madmax33
Guest
Thank you so much for the support and all the information. It is very interesting what they are finding out about the older adults and all these new mutations with CF. I hope they find a cure soon!!!! I love your input and it is very informative. I have known the sweat test is such a simple test and that has been beyond me for the fight I have gone through just to get a DR to order it for me. Just is not something they do where I live, I don't think ever! the person who did my sweat test here, Told me she has been doing them for 30 yrs and mainly babies and children. She only recalled one older adult in her 30 yrs. I even had my test destroyed by the time it hit the lab and was told, (now the hospital is a private lab and my insurance would not cover it anyways!) I just have been through a nightmare. I would not expect anyone to understand but it have really overwhelmed me. It was not the hospital that actually did this, it was from my PCP office and the nurse which called and told me this. I insisted to have the order mailed to me. So she did it and the Hospital told me to fax it to them as soon as I get it so they can set up the appointment. I hospital, needed the order again, and did not know why it got shredded the first time, (I had already been in contact with them) But did clarify they are private now, but with a test like this or ones that can only be done there, Yes they will do them. Seems Like I have to keep fighting ever step of the way. This whole ordeal and the state my health has been in has me at a loss just in general over the medical care where I live. My goal is to get healthy enough to move out of here, where the medical care is better. And of course a diagnose of a rare disease can also make a difference or where you might move. My heart goes out to all the Ill people out there struggling and trying to do the best they can. Always hoping for a cure.
M
madmax33
Guest
Hi Wanted to ask anyone how long does it take the Dr to normally call after the sweat test? I went down Monday and they said the Dr would have it late that afternoon. I guess I am anxious and knowing they have it, what is the normal to wait for a call? I have a appointment on Dec 1st and hope they are not going to make me wait that long.
Aboveallislove
Super Moderator
For newborns same day. Just call the center and ask for them to tell you the results.
M
madmax33
Guest
Got my results
Well the Dr called me this morning. My sweat test is positive so this is the second Positive test. I am very confused right now. The Genetic test I am having done is for the 125 mutations, which the Dr said is the common ones. Now he does not want to diagnose me yet. He said to me you have to have one of these common genetic with maybe one of the rare mutations to have a diagnose of CF?
I am wondering if here in Ca if they just do not see many older adults if any? And Dr do not check older Adults for CF with lung, pancreas problems? He did say there are some other rare reasons why you sweat would be elevated. (which I am aware of) Now really getting thrown off here, as the Dr again stated to me the average age for CF is 36!!
He said to me he would not wish CF on anyone as it is a horrible disease. which it is. I explained to him, if I do have it, It makes a difference in treatment and having a diagnose. He also said I do not have the class symptoms of CF.
what does it take? I do not get it. This leads me to believe they just are not seeing any older adults with CF. I have been sick all my life. With Sinus problems and Chronic Asthma and Chronic Bronchitis . To the point I just live with it most of the time. Antibiotics a lot of time do not treat these on going infections I have. I have major Stomach problems. Diagnosed with IBS, IBD, Gastritis, Colitis, and had a bile duc surgery in 2010. was in very bad shape then and weighed 80 lbs. I have malnusorption disorder and pancreatic insufficiency. ended up with acute pancreatis from the surgery. Diagnosed with fibromyliasa back in the end of 1999. Diagnosed with Osteoporosis in my 40s. I was a very sick child and in and out the hospital as a kid. I have always had trouble keeping on weight. I have a Bronchoscopy back in 2010 and it showed white thick mucus covering both lungs and the Dr said I was full of mucus in the trachea and he cleaned out a lot. Chalked this up to asthma? My recent Ct at the ER is showing mucus plugs? Boy I am at a loss here.
I also have Hashimotos Disease. I have had a bought of health issues and really went down hill in 2010. Of course if I have CF, I am very interested in what and how they are finding out about older adults with CF and you have to wonder if you have had this all you life, the effect of other health issues as you get older. what came first, the chicken or the egg?
I will have to wait until my appointment on the first of December to see what the Dr says. He is very nice, I am just hoping I don't get the ball dropped on me if I don't have a mutation in the 125? Any input here? Anyone else diagnosed with out one of these mutations? How many older adults on this board live in CA and what center do you go to? Love to hear from others.
Well the Dr called me this morning. My sweat test is positive so this is the second Positive test. I am very confused right now. The Genetic test I am having done is for the 125 mutations, which the Dr said is the common ones. Now he does not want to diagnose me yet. He said to me you have to have one of these common genetic with maybe one of the rare mutations to have a diagnose of CF?
I am wondering if here in Ca if they just do not see many older adults if any? And Dr do not check older Adults for CF with lung, pancreas problems? He did say there are some other rare reasons why you sweat would be elevated. (which I am aware of) Now really getting thrown off here, as the Dr again stated to me the average age for CF is 36!!
He said to me he would not wish CF on anyone as it is a horrible disease. which it is. I explained to him, if I do have it, It makes a difference in treatment and having a diagnose. He also said I do not have the class symptoms of CF.
what does it take? I do not get it. This leads me to believe they just are not seeing any older adults with CF. I have been sick all my life. With Sinus problems and Chronic Asthma and Chronic Bronchitis . To the point I just live with it most of the time. Antibiotics a lot of time do not treat these on going infections I have. I have major Stomach problems. Diagnosed with IBS, IBD, Gastritis, Colitis, and had a bile duc surgery in 2010. was in very bad shape then and weighed 80 lbs. I have malnusorption disorder and pancreatic insufficiency. ended up with acute pancreatis from the surgery. Diagnosed with fibromyliasa back in the end of 1999. Diagnosed with Osteoporosis in my 40s. I was a very sick child and in and out the hospital as a kid. I have always had trouble keeping on weight. I have a Bronchoscopy back in 2010 and it showed white thick mucus covering both lungs and the Dr said I was full of mucus in the trachea and he cleaned out a lot. Chalked this up to asthma? My recent Ct at the ER is showing mucus plugs? Boy I am at a loss here.
I also have Hashimotos Disease. I have had a bought of health issues and really went down hill in 2010. Of course if I have CF, I am very interested in what and how they are finding out about older adults with CF and you have to wonder if you have had this all you life, the effect of other health issues as you get older. what came first, the chicken or the egg?
I will have to wait until my appointment on the first of December to see what the Dr says. He is very nice, I am just hoping I don't get the ball dropped on me if I don't have a mutation in the 125? Any input here? Anyone else diagnosed with out one of these mutations? How many older adults on this board live in CA and what center do you go to? Love to hear from others.