Adults and older CF patients regarding the CF centers and getting diagnoised.

[madmax33]

Also I want to state here, Is this Dr looking for past hospitalizations, Cultures or what. I have been fighting my care for so long where I Live. (I am not talking about the CF center) I am talking about my area. Believe me, I do know it is a matter of money or good insurance to get proper treatment. I would have Been taken more serious and had much better treatment and care if this was the case. Just like recently being released from the ER, with partial collapsed lungs, Plural effusion, and mucus plugs. I was only told I had Ammonia and pleurisy. No one follows up and no one address what I have where I live? In fact the Pulmonary Dr I seen here just the other day, was quick to tell me any thing I asked about, I don't have, I don't have, I don't have!! He laughed when he said I see you are being checked for CF. Then he said , you would not be alive. I am telling you, if it is not being bad enough being sick, I am so tired of this kind of ignorance here.

Again, maybe the lack of care here, and this New Dr at the CF center just wants to make sure. I just hope I get a correct diagnose or know where to go from here.

 

[meech]

I am 40, just diagnosed and my mutations were found on the common 32 (I think) mutation panel in Canada. It took about 6-7 weeks for the results here. Hope you get some answers.

 

[2005CFmom]

Oh wow, lung problems, GI issues, early osteoporosis and 2 positive sweat tests! It does sound like CF would be a probable diagnosis. It does not make since that he said you need one of the "common" mutations to have CF; 2 uncommon mutations would cause CF also.

 

[madmax33]

Thank you for the reply's. yes I thought two rare mutations would be a diagnose also. I guess I will have to wait. regardless coming this far, If I have two positive sweat test and if the common mutations don't show, (I will pursue) as the Dr stated Rare conditions can only cause this. So Someone will have to do further testing if that is the case. I am not just letting it go. I would guess then they would want to out rule other diseases? I just hope the CF Center helps me as I get no help here where I live!!!!

I just looked up the symptom's again for adults and seems I have every one of them!! (Not the bacteria as no one has ever done any cultures for them except one time in the nose area at ER and yrs ago in the nose, positive for MRSA then) Expect one time, at the ER with my insistence and that Gram Cocci positive. They called this a normal culture. I have looked this up to, and have found that is not acceptable for a lab to do this without finding out what it grows. Very related to MRSA. I was diagnosed with Chronic Sinusitis and problems in my sinus area. Again no one helped or followed up on this.


It is so frustrating when a Dr wants to say you do not have the classic symptoms , (when I do) He does not have all my history at all. He does not have all my records. and again, I live with chronic sinus problems and am not running to the Dr for this in the 25 yrs I have lived here. I have lived with chronic back pain which basically has been my fight for the last 15 yrs. Pain takes everything out of you.

No dr has every been concerned enough to even find out and do a culture to see why the antibiotic's are not taken care of it.

Back about 7 yrs ago I tested positive for MRSA in my nose. Common sense told me to worry about this with my lung and constant infections. I was told, everyone has it so don't worry about it. Now I see different with this bacteria. A nurse told me, yes you do have to worry about it and if you end up with anomia you will be in trouble. I guess it is a wait and see game now. I would like to have input from others so I am prepared when I go in.

 

[Doglover]

I think you said you were being seen at UC Davis. It would probably be worth driving the 2 hours to Stanford. They are one of the top clinics in the country and I believe I heard they actually have more adult patients then pediatric patients.

 

[madmax33]

Doglover. thanks for the information. I First picked out the closes' center as it is hard at this point to even travel and thank God for my daughter. The other Center is 4 hrs away. So I will follow up with this appointment, and hopefully get somewhere. I do not want to run into insurance issues which very well I am expecting. My next thing is how do I get to that Center and again, if I do not get a diagnose at this Center, I am wondering if this throws me back to the Drs where I live, (who thinks it is impossible) If I have to go through them again, to get a referral to Stanford?? Not quite sure how to do this. It took me 14 yrs here and a Dr I threw of guard to begin with to even order this test for me . Only had seen him twice. I assume I need to wait at this point and see what the genetics show. Ty I wish I would have went there to begin with.

 

[madmax33]

Just a note. This is what I found on Getting a Positive sweat and rare conditions. So really not making any sense to any of this. It seems that would only be a issue of not diagnosing someone because they do not have any CF symptoms. This is what it states.

Again this makes me only question myself, as to why a Dr would state you do not have the typical symtoms. I am more then frustrated at this point, I do not like to have to convince a Dr when all the test are proving otherwise. I have lived a actually Hell of medical care, (that I do not want to even get into) But have had to many health issues and diagnoise, (Proved with test) and then being ignored. Maybe this is why I am so upset at this point. I have lived a nightmare of medical errors and being ignored. Actually just one example, It took leaving this area, to two different Endcro Drs to be diagnosed with thyroid Hashimotos. This was at the time I went down to 80 lbs. Ended up with a pace maker, Got the bile duc surgery. Really I think I was on death door. My auto imagine test was well over 2000 for the diagnose, and should have been no higher then 36? This was a confirmed diagnoise. So after it was under control I was thrown back to the PCP. Did not make me feel comfortable at all. He said all PCP know how to run test and treat this. Well, My doctor actually took a Sed rate paper, and wrote across this test, (Doubt patient has Hashimotos) So little to say getting proper treatment, her following up on this was a joke. I feel if I had Cancer and it showed up, I would get the next Dr to say, no you don't and then they all follow in suit. Sorry I am venting here and trying just show why I am so frustrated.

If I am with a Dr that does not want to believe for what ever reason I do not have this , This worries me. even with the rare disorders, given this with my two positive test, what about all my CF Symptoms?? They do not have anything to do with the few other rare diseases. I need to move out of the area I am in, and just have been to sick with it impossible to even think of that right now. I am going to bed.

False positives: Certain rare disorders can also produce high chloride levels in sweat, but those disorders have different symptoms than cystic fibrosis. If a sweat test produces positive results in a person who has symptoms that are not typical for CF, further testing should be done to confirm the diagnosis.

 

[Doglover]

If I were you I would at least contact Stanford. 650 498-6840 and run your situation by them ( the fact you have had two positive sweat tests, but that the Dr says he does not think you have cf do to your age). They can at least tell you what you would need to do to in order to be seen by them.

 

[madmax33]

Doglover. Well I was thinking this and already have a call in there. The Dr is being very skeptical I would say. So......... It is setting now, and that I was told you need to have one of the common Mutations along with maybe a rarer one. He ran a genetic panel of 125. I ran a other post as My post always end up being to long!!
I am trying to find out what is the facts? He just seems to have that hesitation that I would not have CF. So this has me again really confused and frustrated for sure.
He is not dismissing it, But I felt myself getting defensive as I am so frustrated explaining to a Dr symptoms I have had all my life. When you are told you don't have the classic symptoms. Well yes the only thing I will agree with is the classic of the child hood diagnosed that people did not live that long. Things have changed and I feel this Dr is really not up on Older adults being Diagnosed at all!!!

He Acted like I wanted to be diagnosed and why would I want that, it is a horrible disease. Again I had to explain that I am sick and have been all my life and want a diagnose (of what ever I have) and My research along with symptom's have pointed to CF for over 10YRS.

Some yrs ago I contacted the Jewish Hosp and talked with a nurse which was nice enough to talk with me in length. She was just numb with my health issues and was wondering why I was not checked for CF a long time ago from a pulmonary DR. She told me to insist on the test. So it has to me this Long, where all DRs have refused up till this last new one.

As far as I have seen on this board it is much worse then to not be diagnosed and not get proper treatment and suffer, then to be diagnosed and get proper treatment. How hard is this to understand? Now that he has two sweat test Positive? He left it that he will see me on the first and he wants to be extra careful and be sure before he gives me a diagnose. So maybe it is just me?
One thing I am trying to find out and posted on here. Do you have to have one of the common mutations?? of the 125 to get a diagnose of CF? This I cannot get a answer for, (as of yet) and this is what the Dr told me. SO if this genetic comes out neg, He will say I do not have it. So I feel I will have the ball dropped on me and live with never getting a answer and my current health state.

 

[madmax33]

TO LITTLELAB4CF
Hi Max here. I just seen your diagnose and the mutation. I tried to PM you, box full. Can you tell me , do you have to have a mutation in the COMMON 125 mutations to get a CF diagnose? Love to have this knowledge prior to appointment, needed help. I have two sweat positive now!

 

[madmax33]

Hello Everyone. Just giving a update. As of yet I still do not have a diagnose. My appointment for the follow up on Dec 1st was delayed until Dec 8th. The Dr was waiting for the genetic test to come back. He ran a screen for 112 mutations. I was able to speak with the nurse today, and she let me know nothing came back on the Genetic at this point. My sweat test (second one was 80) My first was 90. I have phoned Stanford and will see if I can get in with them if this Dr is not willing to follow through anymore . Kind of at a lost at this point and just in limbo.

Speaking with the Dr last week, with the second sweat test in hand, still seems to be reluctant to think I have CF? Just going to have to wait and see what he says next Monday. I posted earlier hoping to find some more info on genetic testing. This Dr told me this is for the common genetic mutations and you need to have one to have a diagnose for CF??? I know there are over 1800 mutations so this does not make any sense to me at all.

I would not think there is any standard for CF with all the mutations and diagnosing someone later in life. I certainly have a history of health issues related to CF.

I have so many questions and hope I am prepared for my appointment on Monday.

Also wondering in older adults if they have chronic health issues would this make it more for a Dr to sway away from thinking it is CF. Seems there are only a few Very specific rare disease out there that would make a High sweat test? Also what I read, Most those people have NO symptoms of CF. Also I have read the Sweat test (If something else) is not in the HIGH Levels? any help or input?

I Am really wondering now if having CF, Worrying about these bacteria's in the lungs if this is the case with me, as no one has taken the time to find out what Bacteria
I actually have and wonder if this is why I am so ill? Before coming this far, this has been on my mind now for quite some yrs always wondering why, no common antibiotics seem to take care of the bronchitis and sinus Infections I am suffering with. It is getting to be a way of life. I have CFS so bad and SOB and just can not seem to get enough energy to do everyday chores.

I was diagnosed with Hashimotos thyroid in 2010. I have felt I have other auto immune diseases being so ill.

also back in 2010, I did have a bronchoscopy pretty much demanding it with a yr of being sick. After the wash, the Dr sent in the results and told me it was normal . But will not forget with my follow up when he told me how much mucus was in my trachea, and a LOT he has to keep suctioning out, and my lungs where covered with White thick sticky mucus? said this was my asthma, which he referred to as Chronic. Never heard of this with Asthma and this started my research again that lead to CF again with all the health issues. I had tried to get the picture of the lungs now for the past 4 yrs but they will not give it to me.

Recently I have been diagnosed with a Bladder infection, took antibiotics for 10 days and when I went back, they had me go in a cup again. I get a call a few days later to say you have a bladder infection. Again more antibiotics called in! I Just cant seem to get rid of any thing with antibiotics. Not sure if Bladder problems can be a problem with CF?

I also am Hypoglycemic. The low blood sugar. I have been concerned of a diabetic problem also because when I have a blood panel done, my glucose has been coming out on the high side for over 4 yrs now. Many symptoms of diabetes but cannot get a dr to run the glucose test for the 2 or 4 hr test. they just keep running the 90 day average test of blood sugar. I understand this test if more for people on insulin. This has come out a little on the high side also, and through my research I have found this is not a test to diagnose Diabetes at all, and especially with someone with low blood sugar. I have poly neuropathy and do not know why. Urine problems, Vision problems and my feet hurt most the time.


I Also have not been to see the gastro in 4 yrs now since my bile duc surgery. I am on enzymes , but not working so great for this past yr. Back to bowel problems, and running to the toilet all the time. But this time my weight is up , and I feel bloated all the time. I feel full, most the time and this is quite the opposite of my problems of keeping on weight throughout my life. I feel like I am retaining water or something.
I have had that ammonia for the past 10 months with pleurisy , the partial collapsed lungs and the Ct showed the Plural effusion also. Just starting to feel better with that this last month. I could not lay on my left side at all.
Stanford did tell me they will follow through with me. Just hope it does not run into trying to get in there because of insurance issues. Seems this is going to take some time to find out anything. I will keep undated. Thank you for all the support.