FINALLY...A concrete diagnosis!

[disfan07]

I know there are a lot of people on here who have been thorugh years of misdaignosis and undiagnosable conditions so I had to share this....


After 6 years, my asthma has been officially categorized as Severe Refractory Asthma. The diagnosis itself is not great news but everything makes sense now and it is nice in a way to know the exact diagnosis and not just "complicated or unusual asthma" or...my personal favorite..."we know something is wrong but we don't know exactly what it is"

This explains so much though. It explains why my symptoms have been so unusual. It explains why my condition deteriorates so quickly. It explains why oral prednisone isn't working for attacks and why I need IV steroids. It explains why even on the max. dose of maintenance meds, I still have severe attacks and why I still always have symptoms. It also explains the lung damage from years of mistreatment of my condition.

We have no idea what is going to happen because there is little known about how to treat and how to manage this type of asthma and as of now, it is probably just going to get worse instead of better but our next step is to get approved for xolair (an Anti-IgE medication) and hope that this limits the attacks but the approval for this medication can take up to 6 months to get approved AND, my current IgE level might actually be TOO HIGH to be eligible for this medication. There's an IgE range to qualify and I might be just outside of the range....so we wait....and we wait some more....


BUT....most importantly...we have an answer. And as my doctor said today...if anyone ever tells me that I am faking an asthma attack again, I have every right to tell them to stick it where the sun don't shine (but in other words...lol). It's just a very calming feeling to know that it is not all in my head as many doctors have implied before.

 

[NHdisneylover]

I know there are a lot of people on here who have been thorugh years of misdaignosis and undiagnosable conditions so I had to share this....


After 6 years, my asthma has been officially categorized as Severe Refractory Asthma. The diagnosis itself is not great news but everything makes sense now and it is nice in a way to know the exact diagnosis and not just "complicated or unusual asthma" or...my personal favorite..."we know something is wrong but we don't know exactly what it is"

This explains so much though. It explains why my symptoms have been so unusual. It explains why my condition deteriorates so quickly. It explains why oral prednisone isn't working for attacks and why I need IV steroids. It explains why even on the max. dose of maintenance meds, I still have severe attacks and why I still always have symptoms. It also explains the lung damage from years of mistreatment of my condition.

We have no idea what is going to happen because there is little known about how to treat and how to manage this type of asthma and as of now, it is probably just going to get worse instead of better but our next step is to get approved for xolair (an Anti-IgE medication) and hope that this limits the attacks but the approval for this medication can take up to 6 months to get approved AND, my current IgE level might actually be TOO HIGH to be eligible for this medication. There's an IgE range to qualify and I might be just outside of the range....so we wait....and we wait some more....


BUT....most importantly...we have an answer. And as my doctor said today...if anyone ever tells me that I am faking an asthma attack again, I have every right to tell them to stick it where the sun don't shine (but in other words...lol). It's just a very calming feeling to know that it is not all in my head as many doctors have implied before.

I am so happy for you that you at least KNOW what is going on now. I know how stressful not knowing what it is, and being told you are imagining things can be

Do you mind sharing a little of how your attacks differ from most and caused doctors to say it was all in your head? DD14 is being told things are in her head (even after lung function tests finally did at least show conclusively that she DOES have asthma, after a year of being told otherwise--and 3/4 if her symptoms have gone away or gotten substantially better since she began being treated for it).

 

[FINFAN]

It is a relief of sorts, I know, to get a diagnosis that you can now create a "plan" for. Sorry you have been dealing with the uncertainty for so long, it can cause more trouble than an actual ilness! Our DD went over a year ( not as long as you) from age 19-20+ with very scary heart issues..even raced to ER at college with a heart rate just under 200, had to be injected with meds in the ambulance to shock her back to a normal rhythym...imagine getting that call from your DD's BF (who was racing behind the ambulance)anyway, lots of tests, fears,meds (and the worst to her, cancelling WDW) later, it is increased adreneline basically..and a management plan and knock on wood only 1 scary incident since the correct diagnosis. The relief and control we all felt at the diagnosis was like a new life. Like you, we now look back and can explain a lot of times we thought we/she was going crazy but now it makes sense. I hope approval for the new meds is able to work out, that your levels are in the range you need. You are a trailblazer of sorts!