Finding medical field is not knowledgable about ALS!

[soonerwife]

So frustrating! My PAL hates going to the doctor... Had to convince him to go for his Pulmonary Function test at the local hospital. He messages me during the test and says, he has done the test once and taken a breathing treatment and now has to do it again. What??? You don't have COPD, you have ALS. He told them that but they clearly don't get it. Is there not different codes or tests for the Neurologist to ask for so the test is done properly? They also did not do the test lying down, UGH! So frustrating!

 

[Nuts]

OMG. It sounds like it's time for education. Unfortunately, since this is such a rare disease, it's not unusual for people to not be familiar with it. What kills me is when they don't listen. This is one of the reasons I've been at every medical appointment with my husband. I'm fortuante that I'm able and that he agrees (he advocates for everyone but himself). We've been lucky and had wonderful care at the Duke ALS Clinic, but I'm terrified of him winding up in another hospital where this sort of thing can happen. I'd certainly tell them that there will be no payment, insurance or otherwise, for the breathing treatment. That might get their attention (and then notify the insurance company about unneeded, unwanted, and unauthorized treatments).

 

[pittsburghgal]

We have found this to be so true as well. The pulmonologist my PALS initially saw did the PFT every visit, also with and without the breathing treatment. This was done in his office and done each 4 month visit. He never measured MIP, which the ALS neurologist wanted to know and is important for ALS patients. We found out that his equipment could not measure MIP. He also ordered a chest xray each visit, also done in his office ( and totally unnecessary when my husband was asymptomatic). Once we said that we needed to have the PFT done elsewhere so we could get a MIP measurement and that we did not want a chest xray every 4 months, he lost interest and changed the followup appointment interval to 1 year. We moved on to another pulmonologist.

Sharon

 

[Vincent]

Welcome to the world of rare diseases. With ALS being a 1/50000 disease, and a pcp seeing an average of 2000 patients, your pcp has a 1/25 chance of ever seeing an ALS patient. Even pcps with 2 ALS patients over a career might have them 20 years apart. This is what makes the ALS clinics as important as they are. Unless it is a runny nose I always run everything past the clinic at Sunnybrook.
VIncent

 

[soonerwife]

That just means we have to be super knowledgable and attend every visit to make sure PALS are getting the treatment they need! Lessoned learned!