stacey

[Guest guest]

Hi Stacey,

I know exactly how you feel. It's like your on a deserted planet with just

you and your child. I feel that very same way at times.

Like I am so all alone. It doesn't help either when your child seems to be

drifting further away. My son recently had some problems with a preschool

teacher. She actually was pulling on him to the point she was almost

dragging him. He has now regressed back to not going to the potty as good as

he was. Also, he wants back in his baby crib, not the big boy bed. It's

like the list goes on and on and on. So I do hope things start to

look up for you. Believe me, from my heart, you are not alone.

Wishing you the best.

CASSIE

[Guest guest]

thank you again for your sweet comments about olivia!!

-kim

[Guest guest]

I also get these same attacks. But I only have numbness in my left hand and arm. Pain is so intense I feel like someone is digging my stomach out with a dull spoon. The minute I feel the pain coming on I take an antacid right away. If I catch it soon enough the pain goes away in a few minutes, other wise it lasts about 20 minutes. I saw a doctor for this many years ago and he said I had a hiatal hernia. I just avoid things that cause it, like booze, drinking soda too fast etc.

Tami

Stacey

Hi Stacey,Yes, you were having the same exact attacks I have been having! I can'tfind a whole lot of information about this on the internet, although thereis some. The numbness and weird contortions of my hands was the scariestpart and I also called the ambulance the first time although we ended up notgoing to the ER. My doctor told me something can happen to the vagal nerveduring these reflux attacks and when this happens you might hyperventilatea bit and giving off too much carbon dioxide can cause this symptom in thehands. He had a name for it but I don't know what it was.Maybe I will try the Zantac/ranitidine. Someone also told me Prevacid wasvery good. I was trying Pepcid and Tums and calcium citrate supplements butit didn't help at all.What really did help a LOT is Gaviscon, which creates this foam barrierbetween the stomach and the esophagus. But it has aluminum in it which Ican't imagine is good to take for the long-term and I think whatever else ithas in it is making my polyps worse. ; ( Very upsetting. Because Ineed SOMETHING. So maybe the Zantac I will try. I'm not sure if Prevacidor any of that class of medications is covered on my insurance since you canget some of them over the counter.About Churg-Strauss -- it is a very very serious (and rare) condition and ifyou had it they might not figure out what it was at first but you would bevery very sick and probably unable to do much else except try to figure outwhat it is. Unfortunately it can be fatal especially if not treated. Ihave to say I don't completely understand what all the symptoms are, thereare a lot of technical words involved and it's not something I've learnedabout in my work as a medical transcriber.http://www.churg-strauss.com/Criteria.htmOther than that, I really like their site and may write to them for moreinformation about how they got their foundation started.Here's another link with more specific info about the symptoms;http://www.medicinenet.com/Churg-Strauss_Syndrome/article.htmHope you find something that helps with your symptoms in any caseLori in NYC

[Guest guest]

Lori & Tami,

Thanks for sharing this w/ me. I am still shocked that

these " attacks " might be connected to my other Samter's symtoms.

(the drs told me the same thing about the vagal nerve - just my

bodies response to pain, but now I am wondering more about that!) I

sincerely hope that I do not have Churg-Strauss. I talked to my ENT

about it and she is going to do some research. She doubts it

though. She said I would have had problems w/ my 2 pregnancies. I

do have some circulation problems in my legs (varicose veins, etc)

after pregnancy, and from what I've read about Churg-Strauss I think

that circulation problems in the extremities is a symptom.

Like I said before, taking Ranitidine has kept those attacks away -

thankfully. They did not seem related to my diet for the most part,

so they were difficult to avoid by controlling diet alone.

For now, my polyps are under control, but I have had pnumonia 2x this

winter, and I have a ton of thick mucus in my sinuses, that keeps

clogging up my ears. I have had tubes put in both ears, which does

help to drain them. I'm very surprised to be having such a problem

while my polyps are small. I have been on antibiotics a bunch of

times in the past year, which I'm sure is a problem too.

I started taking Singulair about 1 wk ago, so I am hopefull that will

help. I am also taking Acidophilus in hopes of building up my " good "

bacteria & immunity, after being on antibiotics so much this yr.

Thanks for your responses. Its nice to hear from other people

dealing w/ this. I don't feel as guilty for being sick all the time.

Stacey in MA

> I also get these same attacks. But I only have numbness in my left

hand and arm. Pain is so intense I feel like someone is digging my

stomach out with a dull spoon. The minute I feel the pain coming on

I take an antacid right away. If I catch it soon enough the pain

goes away in a few minutes, other wise it lasts about 20 minutes. I

saw a doctor for this many years ago and he said I had a hiatal

hernia. I just avoid things that cause it, like booze, drinking soda

too fast etc.

> Tami

>

> Stacey

>

>

> Hi Stacey,

>

> Yes, you were having the same exact attacks I have been having!

I can't

> find a whole lot of information about this on the internet,

although there

> is some. The numbness and weird contortions of my hands was the

scariest

> part and I also called the ambulance the first time although we

ended up not

> going to the ER. My doctor told me something can happen to the

vagal nerve

> during these reflux attacks and when this happens you might

hyperventilate

> a bit and giving off too much carbon dioxide can cause this

symptom in the

> hands. He had a name for it but I don't know what it was.

>

> Maybe I will try the Zantac/ranitidine. Someone also told me

Prevacid was

> very good. I was trying Pepcid and Tums and calcium citrate

supplements but

> it didn't help at all.

>

> What really did help a LOT is Gaviscon, which creates this foam

barrier

> between the stomach and the esophagus. But it has aluminum in it

which I

> can't imagine is good to take for the long-term and I think

whatever else it

> has in it is making my polyps worse. ; ( Very upsetting.

Because I

> need SOMETHING. So maybe the Zantac I will try. I'm not sure if

Prevacid

> or any of that class of medications is covered on my insurance

since you can

> get some of them over the counter.

>

> About Churg-Strauss -- it is a very very serious (and rare)

condition and if

> you had it they might not figure out what it was at first but you

would be

> very very sick and probably unable to do much else except try to

figure out

> what it is. Unfortunately it can be fatal especially if not

treated. I

> have to say I don't completely understand what all the symptoms

are, there

> are a lot of technical words involved and it's not something I've

learned

> about in my work as a medical transcriber.

>

> http://www.churg-strauss.com/Criteria.htm

>

> Other than that, I really like their site and may write to them

for more

> information about how they got their foundation started.

>

> Here's another link with more specific info about the symptoms;

>

> http://www.medicinenet.com/Churg-Strauss_Syndrome/article.htm

>

> Hope you find something that helps with your symptoms in any case

>

> Lori in NYC

>

>

>

[Guest guest]

My wife was diagnosed with Churg-Straus and she had not problem with her pregnancy. In fact I understand that frequently the symptoms of auto immune disorders like CSS (Churg-Strauss), Lupus, Rheumotoid Artheritis are actually eleviated to some degree during pregnancy but worsed 3- 6 weeks after birth. This is exactly what happened to my wife. During the early pregnancy her condition was much better but shortly after having the baby she had the worse case of pneumonia she has ever had.

If you have frequent pneumonias this is a very common symptom of CSS. If you think you might be having vascular involvement you need to accelerate your effort to make sure that you do not have CSS because the vascular "stage" is usually the last and most dangerous component of CSS.

-Will

Stacey> > > Hi Stacey,> > Yes, you were having the same exact attacks I have been having! I can't> find a whole lot of information about this on the internet, although there> is some. The numbness and weird contortions of my hands was the scariest> part and I also called the ambulance the first time although we ended up not> going to the ER. My doctor told me something can happen to the vagal nerve> during these reflux attacks and when this happens you might hyperventilate> a bit and giving off too much carbon dioxide can cause this symptom in the> hands. He had a name for it but I don't know what it was.> > Maybe I will try the Zantac/ranitidine. Someone also told me Prevacid was> very good. I was trying Pepcid and Tums and calcium citrate supplements but> it didn't help at all.> > What really did help a LOT is Gaviscon, which creates this foam barrier> between the stomach and the esophagus. But it has aluminum in it which I> can't imagine is good to take for the long-term and I think whatever else it> has in it is making my polyps worse. ; ( Very upsetting. Because I> need SOMETHING. So maybe the Zantac I will try. I'm not sure if Prevacid> or any of that class of medications is covered on my insurance since you can> get some of them over the counter.> > About Churg-Strauss -- it is a very very serious (and rare) condition and if> you had it they might not figure out what it was at first but you would be> very very sick and probably unable to do much else except try to figure out> what it is. Unfortunately it can be fatal especially if not treated. I> have to say I don't completely understand what all the symptoms are, there> are a lot of technical words involved and it's not something I've learned> about in my work as a medical transcriber.> > http://www.churg-strauss.com/Criteria.htm> > Other than that, I really like their site and may write to them for more> information about how they got their foundation started.> > Here's another link with more specific info about the symptoms;> > http://www.medicinenet.com/Churg-Strauss_Syndrome/article.htm> > Hope you find something that helps with your symptoms in any case> > Lori in NYC> > >

[Guest guest]

Will,

Thank you for your info. I am anxiously awaiting a response from my ENT. I

also have an appt w/ my Allergist and I will talk to her about it. Your emails

certainly have me concerned. I hope that your wife is doing ok. Does she

manage her CSS with the typical treatments that are discussed on the websites on

CSS. Also, can you tell me again how they diagnosed her for sure? Does she

still suffer from the same symptons as Samterites as well?

Thanks, Stacey

[Guest guest]

Let me start off by saying the diagnosis of (Churg Strauss Syndrome) CSS is very difficult. I am sure a lot of the samterites have been through similar aggravations. My wife's problems started suddenly 8 years ago.

Since that time here are some of the milestones:

- Spent 6 months as an in patient at Washington University oncology department being treated as though she had a carcenoid tumor.

- Went to a specialist at Mt Sinai in New York.

- Spent several weeks at National Jewish where they did an open lung biopsy, a rib biopsy, a stomach biopsy, an intestinal biopsy, and of course a skin biopsy. Their conclusion was that she had hypereosiniophilic syndrome (HES) (this happened 6 years ago and they actually ruled out CSS apparently because they did not see vascular involvement which turns out to be a poor reasons to rule it out).

- Spent several weeks at s Hopkins.

- Went to the NIH for HES where it was felt to be a misdiagnosis

- Went to an immunologist at town University Hospital. This Doctor, who knows this much spoken of Dr. Kowalski quite well and was actually his roommate when they worked together at NIH, said that she had Samter's Triad.

- Began to have the severe stomach issues (just a few months ago) which lead the aforementioned immunologist to send us to a Rheumatologist at GU and the Vasculitis center at s Hopkins.

- Revaluating her history and medical records the doctor at GU diagnosed CSS. 's Hopkins opinion is still pending.

My wife has all the same symptoms as someone with Samter's Triad. Indeed the town immunologist says that because she has the three symptomatic components she does technically have Samter's Triad. Her polyp problems are apparently off the scale compared to his other patients and her reaction to aspirin is apparently much more severe and manifests itself slightly differently.

In addition to these symptoms she gets rashes on her ankles and sometimes gets large hives all over her body. She also gets pneumonia chronically. Endoscopy and colonoscopy revealed no source for her stomach problems but when she went on Prednisone it went away.

So far the only treatment she has had specifically for CSS is the prednisone which she is now perpetually on. The doctor at GU does not want to wean her off for fear that the disease might progress but we are trying to find a low level that keeps things in check. There are a bunch of drugs we will be testing in conjunction with the prednisone. Some of these are mentioned on the web but I didn't see mention of Gleevec with regards to CSS.

Good luck to you and feel free to e-mail me with any questions related to symptoms, drugs, doctors, etc.

-Will

Re: Re: Stacey

Will,Thank you for your info. I am anxiously awaiting a response from my ENT. I also have an appt w/ my Allergist and I will talk to her about it. Your emails certainly have me concerned. I hope that your wife is doing ok. Does she manage her CSS with the typical treatments that are discussed on the websites on CSS. Also, can you tell me again how they diagnosed her for sure? Does she still suffer from the same symptons as Samterites as well?Thanks, Stacey

[Guest guest]

Hi Will,

I just read your email. Most of us with samters have anaphalactic reactions to aspirin, some of us to Tylenol too. Maybe your doctor doesn't deal with many people with Samters. Here's just a quick list of things I've been dealing with since my first reaction to aspirin. See if this sounds familiar.

Rashes on my legs, inside of my arms, and sometimes on my stomach. (small dots and sometimes perfect rings with a white center)

small intestine problems (cramping in the am, which feels like labor)

diarhea (never ever constipated)

headaches

constant pressure in my frontal sinuses

fatigue

polyps (more under control now that I'm taking Celebrex)

seasonal asthma

acid reflux

hiatal hernia (severe attacks with incredible pain)

food getting stuck in my esophogus (not restricting breathing though)

vision problems

constant mucus postnasal mostly

If I thought about it a little more I could probably list a bunch more. Does this sound familiar. Samters, I am convinced is wrecking havoc on our bodies. I really was a pretty healthy kid. I think that's why I always reflect back to how wonderful my childhood was. I can't imagine a whole day where I feel good and energenic. About every few months I sit down, have a good cry and feel extremely sorry for myself and then I go on. Hope this helps.

Tami

Re: Re: Stacey

Will,Thank you for your info. I am anxiously awaiting a response from my ENT. I also have an appt w/ my Allergist and I will talk to her about it. Your emails certainly have me concerned. I hope that your wife is doing ok. Does she manage her CSS with the typical treatments that are discussed on the websites on CSS. Also, can you tell me again how they diagnosed her for sure? Does she still suffer from the same symptons as Samterites as well?Thanks, Stacey