Dr. Lichtenberg, I hope you will reply to this please.


Doctor, we have patients on here who haven't many options financially.  Sometimes some of us who have been diagnosed will get other patients from behind the scenes asking for us as to how to get into the NIH.   I've tried to help several patients for these patients often are at their wits end and have no hope financially of getting help anywhere else.   I know the NIH "must follow protocol" and so they are limited in how they can help patients outside of that protocol.  However, there is one study which has to do with anaphylaxis and this study seems to be the one which a possible MCAS patient could get a diagnosis especially seeing that Dr Metcalfe is not looking at MCAS patients and only SM patients with a proven diagnosis.  

Doctor, what do we do?  How can we support these patients?  I've spoken with Dr. Carter and she is so busy, but very gracious, but not much help.  Can you give any suggestions as to how we can help these patients?  Is there someone else we could speak with?  We've had patients here who go through tons of anaphylaxis and want to go to the NIH but the doors don't open and they are stuck in the doctor grind mainly due to their not finding a doctor who knows what they are looking at.  

Can you give us some suggestions please?

Thank you!


Lisa

hi dixiepicsy. Yeah clearly Dr. Lichtenberg has misunderstood Lisa's question. Lisa was asking about the scariest feature of MCAD for me: dynamic triggers.

With dynamic triggers the number of triggers are often changing. If we have strong or frequent reactions to triggers it often makes us more sensitive to where we have stronger reactions, and also suddenly begin reacting to many things that were tolerated fine before. So then our "trusty" list of known triggers can quickly become just a small subset of our triggers.

Luckily trigger avoidance, especially in conjunction with meds, allow us to become less sensitive, but it's very hard to become less sensitive once you're reacting to everything because it's so hard to avoid triggers long enough for the immune system to calm down.

I'll be glad when my living situation improves so I can avoid triggers long enough to not have constant brain fog and mental fatigue so I can read more publications on MCAD. But so far it seems the common aspect of MCAD, diverse triggers, is underpublicized, and I haven't even seen anything about the dynamic triggers feature of MCAD published by MCAD doctors and researchers.

And it really annoys me because dynamic diverse triggers, when present, and depending on symptoms, can be an enormous clue to suspect MCAD. I think it should compensate for atypical MCAD-consistent symptoms, for suspecting MCAD.

To me, dynamic diverse triggers with unexplained atypical, but MCAD consistent, symptoms is even a bigger clue of suspecting MCAD than typical MCAD symptoms alone. So I think it should help doctors in suspecting MCAD with atypical symptoms, but I get the impression it's really underused as a diagnostic clue.

Also doctors need to know this for maintenance of MCAD too. It would be best for patients to learn of this feature of MCAD through their doctor the moment they're diagnosed instead of putting patients at risk of learning it the hard way. So it's baffling and annoying how underpublicized it is.

So it's not surprising Dr. Frank Lichtenberger may not have learned of dynamic diverse triggers from the MCAD specialists/researchers at that time, but hopefully he is aware now.