(Archived from soundandvision - original forum)
soundandvision

Anyone have any doctor recs for WI or IL or can refer me to a doctor that may be able to suggest someone?  I live in Milwaukee and I'm having a hard time finding someone to go to aside from the Mayo Clinic in MN (unfortunately my health insurance doesn't cover Mayo and I just don't have the funds).

Thanks!

-Kiley
07 September 2010 11:18 AM

(Archived from deborahw - original forum)
deborahw
Yes, be careful with Dr. Greenberger. Old school is the perfect term for him. I believe that when I researched doctors, he was a strong advocate of putting patients on prednisone as their main remedy. Geez, that would be awful (not to mention that is an outdated remedy now).
__________________
Feel well!
Deborah
07 September 2010 09:11 PM

Hi All ,

Dr Greenburger developed the first IA diagnosis protocol . For this may of us are grateful . As it made IA offical when anaphylaxis was still something no one wanted to diagnose . he was the first to allow diagnosis of IA without hypotension ( low blood pressure ) and acknowldge abdominal anaphylaxis as an entity .

IA -
      Frequent ( more than 6 episodes a year )
      Infrequent ( less than 6 )
      Genreralised - utricarial , angioodema , assoc with severe respiratory distress / syncope
      OR hypotension and GI symtoms
      Angioodema = massive tounge enlargement
      OR severe pharahngeal
      OR Laryngeal swelling with utricaria or peripherial odeama


But he did ,and from what others have said still does still see steriods as a primary treatment . This was based on several , now rather unhelpful articles from the northwest , have references , which discussed the presence of steriod dependant IA , that needed large daily doses to create stability and no anphylaxis .

Over time it has been found it doesn't really work as they and DR Greenburger thought .

We are lucky to have new drugs to allow steriods to be emergency only xxxxx

Josie xxxxxx

Hi heather ,

That was kind of my point but didn't put it as well as you  Without his work I would never have known that there may be a name for my illness .

Yes , steriods do work , but as you say the side effects are not viable long term . I am a case in point xxxx It controlled my reactions , but I put on 3 stone 42lb in 6 months , it unmasked diabetes and my adrenals havent yet recovered . BUT Steriods revoloutionise my symptoms . They day steriods can be developed that work with no side effects .  will be first in the que . I wander if I was helped into stability by them ???? I will never know .

For doctors who do not understand idiopathic anaphylaxis , Dr Greenburgers work helps them understand .

Essensailly we now have the drugs he would ahve loved to ahve had to treat us with

My statement that the guidance was unhelpful , was that , unf some doctors used them wholesale not in the manner described by Dr Greenburger and his colluges . Steriod sparing ( reducing ) is recognised as being very difficult for patients with idiopathic reactions . Now ( here in the UK ) other drugs are given to patients who can not wean safely . The choices are :- cyclosporine , an immune surpressant used post transplant ( neoral ) and methotrexate , an immune surpressant with less kidney implications . I ahve high blood pressure and diabetes , so if I go into another snowball of reactions , methotrexate is the recommended drug of choice for me .

When I was on steriods I was wholly undermedicated . In an anphylaxis I have IV hydrocortisone ( solu medrol ) 200mg and 40mg for a week , then wean down .

My bones survived this , possibly because I was pouring pints of milk down my neck due to thirst from the emerging diabetes .

I am glad DR Greenburger helped you . I had hoped I would meet him , because of the influence his work had on my understanding of what was happening to me , a good while before I heard of mast cell activation syndrome

many hugs
Josie