Late Diagnosis

Fancymushroom

New member
Me too.. similar story as diagnosed at just gone 19. Was fobbed off and diagnosed with all sorts before a sweat test was done. Pancreas insufficient (thought I had IBS) and diffuse lung disease ("asthma/allergies/low immune system") X
 

Fancymushroom

New member
Me too.. similar story as diagnosed at just gone 19. Was fobbed off and diagnosed with all sorts before a sweat test was done. Pancreas insufficient (thought I had IBS) and diffuse lung disease ("asthma/allergies/low immune system") X
 

Fancymushroom

New member
Me too.. similar story as diagnosed at just gone 19. Was fobbed off and diagnosed with all sorts before a sweat test was done. Pancreas insufficient (thought I had IBS) and diffuse lung disease ("asthma/allergies/low immune system") X
 

4Him2000

New member
ok to get to the point here is what I have had

Breathing problems ( just diagnoised with asthma)

persistent cough sometimes with mucus ( much better since diagnoised with allergies )

mucussy

Allergies to animals and ragweed and dustmites ( supposedly not to food)

thought I was lactose ntolerant ( Dr. said he does not think it's that. I had a blood test for Celiac and that came back Neg. )

Sinus Problems

Crater throat

strep and Tonsilitis a lot when I was a kid and one case of strep as an adult

hearing loss and ear always feels plugged

numerous of colds ( most of the time they produce a lot of mucuss)

numerous Ear infections

unexplained ulcers in throat ( last summer it was so bad I had to go to the Dr.)

Bronchitis 2 times

stools change all the time

bruising

Eczema

unexplained rashes

scoliosis

MVP

had a pnuemonia vaccine due to low antibodies for that

I mentioned to my Dr. that CF was in my family history and she brushed me off. What do you think???
 

4Him2000

New member
ok to get to the point here is what I have had

Breathing problems ( just diagnoised with asthma)

persistent cough sometimes with mucus ( much better since diagnoised with allergies )

mucussy

Allergies to animals and ragweed and dustmites ( supposedly not to food)

thought I was lactose ntolerant ( Dr. said he does not think it's that. I had a blood test for Celiac and that came back Neg. )

Sinus Problems

Crater throat

strep and Tonsilitis a lot when I was a kid and one case of strep as an adult

hearing loss and ear always feels plugged

numerous of colds ( most of the time they produce a lot of mucuss)

numerous Ear infections

unexplained ulcers in throat ( last summer it was so bad I had to go to the Dr.)

Bronchitis 2 times

stools change all the time

bruising

Eczema

unexplained rashes

scoliosis

MVP

had a pnuemonia vaccine due to low antibodies for that

I mentioned to my Dr. that CF was in my family history and she brushed me off. What do you think???
 

4Him2000

New member
ok to get to the point here is what I have had
<br />
<br />Breathing problems ( just diagnoised with asthma)
<br />
<br />persistent cough sometimes with mucus ( much better since diagnoised with allergies )
<br />
<br />mucussy
<br />
<br />Allergies to animals and ragweed and dustmites ( supposedly not to food)
<br />
<br />thought I was lactose ntolerant ( Dr. said he does not think it's that. I had a blood test for Celiac and that came back Neg. )
<br />
<br />Sinus Problems
<br />
<br />Crater throat
<br />
<br />strep and Tonsilitis a lot when I was a kid and one case of strep as an adult
<br />
<br />hearing loss and ear always feels plugged
<br />
<br />numerous of colds ( most of the time they produce a lot of mucuss)
<br />
<br />numerous Ear infections
<br />
<br />unexplained ulcers in throat ( last summer it was so bad I had to go to the Dr.)
<br />
<br />Bronchitis 2 times
<br />
<br />stools change all the time
<br />
<br />bruising
<br />
<br />Eczema
<br />
<br />unexplained rashes
<br />
<br />scoliosis
<br />
<br />MVP
<br />
<br />had a pnuemonia vaccine due to low antibodies for that
<br />
<br />I mentioned to my Dr. that CF was in my family history and she brushed me off. What do you think???
<br />
 

Melissa75

Administrator
I would get a full immune work up from an infectious disease specialist or even your primary care, just make sure they check all the sub classes of the IG stuff. Sorry that is not scientific sounding. I am basing this mostly on the throat ulcer comment, though if you were already on asthma meds, it could have been thrush.

Allergies, asthma, eczema, sinusitis, ear and upper respiratory bacterial infections often all go together. That explains about half of what you listed and exists in people with and without CF.

Changing stools is normal as far as I can tell. People here speak of violent gastro symptoms and being underweight before diagnosis despite eating a lot of food. Is that what you mean?

With your asthma diagnosis, what was your overall lung function? Were you told it was in the normal range or not? Normal would not rule out lung disease, but below the average range would be telling.

I don't know what crater throat or MVP are.

Plenty of people on this site were diagnosed late and present with atypical symptoms, so genetic testing is not a waste of time. But unless you present with enough big symptoms, you won't get insurance coverage for the testing:
lung damage on x-ray/ct scan, sputum cultures with atypical bacteria, signs of inability to absorb nutrients, sinus polyps.
(Maybe someone else can add something I've missed.)
 

Melissa75

Administrator
I would get a full immune work up from an infectious disease specialist or even your primary care, just make sure they check all the sub classes of the IG stuff. Sorry that is not scientific sounding. I am basing this mostly on the throat ulcer comment, though if you were already on asthma meds, it could have been thrush.

Allergies, asthma, eczema, sinusitis, ear and upper respiratory bacterial infections often all go together. That explains about half of what you listed and exists in people with and without CF.

Changing stools is normal as far as I can tell. People here speak of violent gastro symptoms and being underweight before diagnosis despite eating a lot of food. Is that what you mean?

With your asthma diagnosis, what was your overall lung function? Were you told it was in the normal range or not? Normal would not rule out lung disease, but below the average range would be telling.

I don't know what crater throat or MVP are.

Plenty of people on this site were diagnosed late and present with atypical symptoms, so genetic testing is not a waste of time. But unless you present with enough big symptoms, you won't get insurance coverage for the testing:
lung damage on x-ray/ct scan, sputum cultures with atypical bacteria, signs of inability to absorb nutrients, sinus polyps.
(Maybe someone else can add something I've missed.)
 

Melissa75

Administrator
I would get a full immune work up from an infectious disease specialist or even your primary care, just make sure they check all the sub classes of the IG stuff. Sorry that is not scientific sounding. I am basing this mostly on the throat ulcer comment, though if you were already on asthma meds, it could have been thrush.
<br />
<br />Allergies, asthma, eczema, sinusitis, ear and upper respiratory bacterial infections often all go together. That explains about half of what you listed and exists in people with and without CF.
<br />
<br />Changing stools is normal as far as I can tell. People here speak of violent gastro symptoms and being underweight before diagnosis despite eating a lot of food. Is that what you mean?
<br />
<br />With your asthma diagnosis, what was your overall lung function? Were you told it was in the normal range or not? Normal would not rule out lung disease, but below the average range would be telling.
<br />
<br />I don't know what crater throat or MVP are.
<br />
<br />Plenty of people on this site were diagnosed late and present with atypical symptoms, so genetic testing is not a waste of time. But unless you present with enough big symptoms, you won't get insurance coverage for the testing:
<br />lung damage on x-ray/ct scan, sputum cultures with atypical bacteria, signs of inability to absorb nutrients, sinus polyps.
<br />(Maybe someone else can add something I've missed.)
<br />
<br />
<br />
 

4Him2000

New member
No I was just diagnoised with asthma about two months ago. My PTO's were on the low side of normal. The xray came back as good they said.Yes I am talking stomach pain and feeling sometimes like my stomach is extended out to much ( if that makes sense) . I am not underwieghtI usually stay within the same 10 pounds. Sometimes I get really fatigue also. Crater throat is from your sinuses draining too much and builds up in your throat.MVP is mitro valve prolapse .
 

4Him2000

New member
No I was just diagnoised with asthma about two months ago. My PTO's were on the low side of normal. The xray came back as good they said.Yes I am talking stomach pain and feeling sometimes like my stomach is extended out to much ( if that makes sense) . I am not underwieghtI usually stay within the same 10 pounds. Sometimes I get really fatigue also. Crater throat is from your sinuses draining too much and builds up in your throat.MVP is mitro valve prolapse .
 

4Him2000

New member
No I was just diagnoised with asthma about two months ago. My PTO's were on the low side of normal. The xray came back as good they said.Yes I am talking stomach pain and feeling sometimes like my stomach is extended out to much ( if that makes sense) . I am not underwieghtI usually stay within the same 10 pounds. Sometimes I get really fatigue also. Crater throat is from your sinuses draining too much and builds up in your throat.MVP is mitro valve prolapse .
<br />
 

bharison

Member
I was diagnosed last year at age 64. Made it to 65 - May 30, 2011. My sister died from CF 40 years ago at age 21. At that point based on sweat test, I was told I was probably a carrier w/symptoms. <br><br>I have struggled with lung problems all my life and basically assumed it was due to CF genes but I never could convince any of the many docs and pulmonary specialists that treated me to treat me like I had CF. I was on a steady decline for about 5 years falling lung capacity and finally got referred to pulmonary doc who treated adult CF. I am doing much better with all the treatments that are available today that were not there for my sister. I am pancreatic sufficient. <br><br>I am an avid lap swimmer and dragged myself to the pool many mornings, but I think that is partly why I am still here....<br><br>BMH<br>Ventura, CA<br>
 

bharison

Member
I was diagnosed last year at age 64. Made it to 65 - May 30, 2011. My sister died from CF 40 years ago at age 21. At that point based on sweat test, I was told I was probably a carrier w/symptoms. <br><br>I have struggled with lung problems all my life and basically assumed it was due to CF genes but I never could convince any of the many docs and pulmonary specialists that treated me to treat me like I had CF. I was on a steady decline for about 5 years falling lung capacity and finally got referred to pulmonary doc who treated adult CF. I am doing much better with all the treatments that are available today that were not there for my sister. I am pancreatic sufficient. <br><br>I am an avid lap swimmer and dragged myself to the pool many mornings, but I think that is partly why I am still here....<br><br>BMH<br>Ventura, CA<br>
 

bharison

Member
I was diagnosed last year at age 64. Made it to 65 - May 30, 2011. My sister died from CF 40 years ago at age 21. At that point based on sweat test, I was told I was probably a carrier w/symptoms. <br><br>I have struggled with lung problems all my life and basically assumed it was due to CF genes but I never could convince any of the many docs and pulmonary specialists that treated me to treat me like I had CF. I was on a steady decline for about 5 years falling lung capacity and finally got referred to pulmonary doc who treated adult CF. I am doing much better with all the treatments that are available today that were not there for my sister. I am pancreatic sufficient. <br><br>I am an avid lap swimmer and dragged myself to the pool many mornings, but I think that is partly why I am still here....<br><br>BMH<br>Ventura, CA<br>
 
B

bookworm

Guest
Hello,

You mention you have scoliosis, mitral valve prolapse and persistent cough. It would be wise for you to find an infectious disease doctor and have some sputum cultures done for acid fast bacteria to rule out mycobacterium avium complex (MAC also referred to as NTM, non-tuberculous mycobacterium). It seems to affect people who are female, have scoliosis and mitral valve prolapse and a hallmark is persistent cough. (It also affects AIDS patients more seriously, but there is a distinct population that are female, have scoliosis and mitral valve prolapse. Another feature is being double-jointed (being able to bend your fingers back farther than normal, etc.) Some people just get MAC from exposures like hot tubs, so you might have heard of it being called "hot tub lung".

It may not be MAC at all, but a good infectious disease doctor will likely take that cough seriously. Get a second opinion. X-rays can look fine with MAC and the damage can only show up on CT scans. People with CF are also predisposed to MAC infection, so a good infectious disease doctor may also suspect CF and request CF testing.
 
B

bookworm

Guest
Hello,

You mention you have scoliosis, mitral valve prolapse and persistent cough. It would be wise for you to find an infectious disease doctor and have some sputum cultures done for acid fast bacteria to rule out mycobacterium avium complex (MAC also referred to as NTM, non-tuberculous mycobacterium). It seems to affect people who are female, have scoliosis and mitral valve prolapse and a hallmark is persistent cough. (It also affects AIDS patients more seriously, but there is a distinct population that are female, have scoliosis and mitral valve prolapse. Another feature is being double-jointed (being able to bend your fingers back farther than normal, etc.) Some people just get MAC from exposures like hot tubs, so you might have heard of it being called "hot tub lung".

It may not be MAC at all, but a good infectious disease doctor will likely take that cough seriously. Get a second opinion. X-rays can look fine with MAC and the damage can only show up on CT scans. People with CF are also predisposed to MAC infection, so a good infectious disease doctor may also suspect CF and request CF testing.
 
B

bookworm

Guest
Hello,
<br />
<br />You mention you have scoliosis, mitral valve prolapse and persistent cough. It would be wise for you to find an infectious disease doctor and have some sputum cultures done for acid fast bacteria to rule out mycobacterium avium complex (MAC also referred to as NTM, non-tuberculous mycobacterium). It seems to affect people who are female, have scoliosis and mitral valve prolapse and a hallmark is persistent cough. (It also affects AIDS patients more seriously, but there is a distinct population that are female, have scoliosis and mitral valve prolapse. Another feature is being double-jointed (being able to bend your fingers back farther than normal, etc.) Some people just get MAC from exposures like hot tubs, so you might have heard of it being called "hot tub lung".
<br />
<br />It may not be MAC at all, but a good infectious disease doctor will likely take that cough seriously. Get a second opinion. X-rays can look fine with MAC and the damage can only show up on CT scans. People with CF are also predisposed to MAC infection, so a good infectious disease doctor may also suspect CF and request CF testing.
 

Simba15

Member
I was diagnosed at age 50 after going to many many many doctors my whole life and no one ever even considering testing me for it!
 

Simba15

Member
I was diagnosed at age 50 after going to many many many doctors my whole life and no one ever even considering testing me for it!
 
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