Anybody with diagnosed eosinophilic syndrome?

[Guest guest]

In January, I started having problems with severe edema and after months of

testing, we've figured out I've been dealing with eosinophilic hepatitis,

chronic eosinophilic pneumonia and that I have a skin issue chock full of

eosinophils--they're still not sure if it's eczema, psoriasis or something

else. The cause for the edema has been blamed on eosinophils attacking my

capillaries. This whole experience has basically sucked. Causing me to at

first gain 20 pounds of water (edema) and then lose 40 pounds (which is a

good thing because I'm one of those celiac's who has trouble keeping the

weight off). I've had to go through tons of blood work and several biopsies

(lung, small bowel and skin) and bone marrow is next to figure out the cause

of why my eosinophils are attacking my organs. I'm currently on Prednisone

for the pneumonia as my lungs were pretty bad off, but it has helped the

overall pain I've been dealing with too. (I'm not a fan of steroids, but in

this case, it was the most necessary thing I could have done!)

 

This is totally a long shot, but I really would like somebody to talk to who

actually knows something about this. I have several doctors who are

treating me and have an appointment to meet with a hematologist in 2 weeks.

But really, my best source of information has been the internet, which is

sometimes good, sometimes not. And having several doctors is great for some

things, but I've got my pulmonary doc basically saying, " we've got this

figured out, I see people with eosinophilic issues all the time " to my

regular doctor saying that this appointment with the hematologist is the

most important appointment I'm going to have.

 

I have a great support system of friends, but I feel like they don't fully

grasp what it's like having chronic diseases. Living in Portland, I've

never felt very alone with my celiac disease because so many people here

either have it or have some form of a gluten-intolerance. But I'm under the

impression that eosinophilic syndromes are very rare so finding a " support "

group seems rather unlikely...

 

Thanks,

 

Marie

 

..

 

 

 

[Guest guest]

I know it's been discussed on Food Allergy Kitchen and gfcf recipes.

You might want to check in there.

 

Pam

 

On Thu, Aug 6, 2009 at 12:17 PM, Marie Nelson<marie.nelson wrote:

>

>

> In January, I started having problems with severe edema and after months of

> testing, we've figured out I've been dealing with eosinophilic hepatitis,

> chronic eosinophilic pneumonia and that I have a skin issue chock full of

> eosinophils--they're still not sure if it's eczema, psoriasis or something

> else. The cause for the edema has been blamed on eosinophils attacking my

> capillaries. This whole experience has basically sucked. Causing me to at

> first gain 20 pounds of water (edema) and then lose 40 pounds (which is a

> good thing because I'm one of those celiac's who has trouble keeping the

> weight off). I've had to go through tons of blood work and several biopsies

> (lung, small bowel and skin) and bone marrow is next to figure out the cause

> of why my eosinophils are attacking my organs. I'm currently on Prednisone

> for the pneumonia as my lungs were pretty bad off, but it has helped the

> overall pain I've been dealing with too. (I'm not a fan of steroids, but in

> this case, it was the most necessary thing I could have done!)

>

> This is totally a long shot, but I really would like somebody to talk to who

> actually knows something about this. I have several doctors who are

> treating me and have an appointment to meet with a hematologist in 2 weeks.

> But really, my best source of information has been the internet, which is

> sometimes good, sometimes not. And having several doctors is great for some

> things, but I've got my pulmonary doc basically saying, " we've got this

> figured out, I see people with eosinophilic issues all the time " to my

> regular doctor saying that this appointment with the hematologist is the

> most important appointment I'm going to have.

>

> I have a great support system of friends, but I feel like they don't fully

> grasp what it's like having chronic diseases. Living in Portland, I've

> never felt very alone with my celiac disease because so many people here

> either have it or have some form of a gluten-intolerance. But I'm under the

> impression that eosinophilic syndromes are very rare so finding a " support "

> group seems rather unlikely...

>

> Thanks,

>

> Marie

>

> .

>

>

[Guest guest]

I'd suggest emailing Dr. John McDougall drmcdougall

 

He always emails back within 24 hours, and is totally tuned in to auto-immune

issues.

 

All the best, Deborah

 

 

In January, I started having problems with severe edema and after months of

testing, we've figured out I've been dealing with eosinophilic hepatitis,

chronic eosinophilic pneumonia and that I have a skin issue chock full of

eosinophils--they're still not sure if it's eczema, psoriasis or something

else. The cause for the edema has been blamed on eosinophils attacking my

capillaries. This whole experience has basically sucked. Causing me to at

first gain 20 pounds of water (edema) and then lose 40 pounds (which is a

good thing because I'm one of those celiac's who has trouble keeping the

weight off). I've had to go through tons of blood work and several biopsies

(lung, small bowel and skin) and bone marrow is next to figure out the cause

of why my eosinophils are attacking my organs. I'm currently on Prednisone

for the pneumonia as my lungs were pretty bad off, but it has helped the

overall pain I've been dealing with too. (I'm not a fan of steroids, but in

this case, it was the most necessary thing I could have done!)

 

This is totally a long shot, but I really would like somebody to talk to who

actually knows something about this. I have several doctors who are

treating me and have an appointment to meet with a hematologist in 2 weeks.

But really, my best source of information has been the internet, which is

sometimes good, sometimes not. And having several doctors is great for some

things, but I've got my pulmonary doc basically saying, " we've got this

figured out, I see people with eosinophilic issues all the time " to my

regular doctor saying that this appointment with the hematologist is the

most important appointment I'm going to have.

 

I have a great support system of friends, but I feel like they don't fully

grasp what it's like having chronic diseases. Living in Portland, I've

never felt very alone with my celiac disease because so many people here

either have it or have some form of a gluten-intolerance. But I'm under the

impression that eosinophilic syndromes are very rare so finding a " support "

group seems rather unlikely...

 

Thanks, Marie

.