Re: Another Newbie Here With Questions About Testing....

[Guest guest]

Hi Dana,

I think you know as much or more about EN than many doctors from your research.

Dermatologists are good for diagnosing EN, and the better ones will give you

tests to see if they can uncover the trigger. But then they simply send you to

the specialist who treats the trigger if it is anything more complex than

treating an underlying strep infection or uncovering a medication you are having

a reaction to.

I am thinking you may have Lungren's Syndrome--a mild self limiting form of

sarcoidosis. You can tell if you get a chest X-ray. EN does have associated

joint pain in about half the cases, so while it is possible you have a rheumatic

condition, it is possibly just part of the EN syndrome.

Have you checked to see if your current medications could be triggering your EN?

In my opinion, your dermy has limited knowledge and wants to pass you off to

someone who knows more. Tell the rheumatologist about the coughing and I suggest

tell him you want a chest x ray to rule out sarcoidosis and Lungren's syndrome.

He can order it himself and send you to a pulmonary specialist if it shows any

problems.

I hope you continue to improve.

Love,

>

> Hi all. Thank you for this amazing group. It is the most informative

yahoo group I have ever been apart of!

>

> I do have a few questions though and I wasn't able to find an answer in the

files, but it is definitely possible I missed them.

>

> I went to a local dermatologist and he diagnosed me with EN. I think mine is

pretty classical as I knew what I had before I went into the doc (after some

googling lol). I just wanted to make sure and then start pursuing or ruling out

any underlying issues.

>

> So to make a long story short, the dermatologist said he doesn't see EN very

often (maybe twice in his entire career), but he didn't really seem all that

concerned. I flat out asked him if we should order some extra testing (because I

knew this was just a sign of something else going on in the body) Yet he ordered

no labs, no chest x ray and pretty much said to just go see an rheumatologist. I

told him over Christmas I was very very sick. Terrible cough, no voice, coughing

up nasty stuff and it felt like I had pneumonia. I started to get better, so I

never went to the docs about it. It was the first time in many years I was that

sick, so he said the EN was probably just a trigger from that.

>

> Now to be fair, I actually liked the doctor, so I don't want to be too hard on

him, but I'm starting to now wonder if he sort of... how do I put this

nicely...sent me off to another doctor to get me out of his hair. He didn't

really seem like that, so part of me wonders if he really didn't know what to do

next. Do most dermatologist not know about EN?

>

> Is a rheumatologist going to be able to help me here? Is this the right next

step or should I go back to the derm and ask him to take charge of this? I

really don't know what's the right thing in this situation. I do have other

health issues (adrenal insufficiency and dysautonomia (POTS)), so I think I

should rule out some of the bad things like sarcoidosis and in the very least a

strep infection. I already have 2 other rare conditions, so what's another one?

lol

>

> Thank you so much for any input at all. I see the rheumy on Friday morning and

I have to tell you, I'm pretty nervous about it. I have never had joint pain and

just pain all over like this ever in my life. The good news is that, it seems

like the nodules on my ankles and shins are already getting better, so I'm very

thankful. Let's hope new ones don't show up.

>

> --Dana

>

[Guest guest]

..,Been a while since I have been on here. I just found out a childhood friend of me has something that may or may not related. She gets grape size lumps on her jaw line and on her face. Her dr told her she had Sweets Syndrome. She was Keppra(sp?) but she went to 2 other drs., one a cardiologist, and I believe a rheumatoid dr. I told her

about this group, but not sure if there is a group that may be better suited for her. Was wondering if you could lend a suggestion that I could pass on to her? I have been doing ok with mine. I still have messed up joints. I am going for a floroscopy injection tomorrow into my hip(s). There is some arthritis in the area, and I am in pain a good part of the day. I am off work for a month or so between seasons. I just need something to kill the discomfort. I constantly pop and grind as I walk. But the feet, I am sure are related to the EN. Esp since so many on here have problems with their feet.ti i hope things are looking up for you and yours!Debbie

[Guest guest]

I just wanted to follow up for future sufferers that search these boards for

some help. The labs suggest I had strep throat recently, which is crazy because

I did not have a fever with it, nor did I go to the doctors and get antibiotics.

Makes me wonder if it became rheumatic fever? The symptoms of rheumatic fever

are identical to EN and I was having terrible chest pains and arrhythmia.

I also tested positive ANA, so we are doing even more testing. However I am

thinking the positive ANA is not related to this and more related to my other

previous health conditions. With a positive ANA, it seems like I can rule out

Behcet's Disease from what I've read online. I still have ulcers forming in my

mouth, so I don't know what that's about.

Chest xray was clear, so no sarcoidosis. I'm getting the labs faxed to me, so I

can take a look at them myself. The docs office seemed really hesitant about

sending them to me. Every other doc sends me my stuff without issue, so if they

won't do it, then I'll go around them and call my PCP. /sigh

I had another really bad EN flare 2 days ago and my foot swelled so much I could

not even wear my slippers. It was so very painful, but today is a lot better.

All I can do is take each day one by one and pray the next one is better.

--Dana

> >

> > Hi Dana,

> > Also, since you mentioned the mouth ulcers, you might explore Behcets

> > Syndrome

> >

> > http://www.medicinenet.com/behcets_syndrome/article.htm

> >

> > Don't get terrified by the description of it--usually it can be controlled

and doesn't affect as much of the body as they mention--they are giving the

possible places, but usually the mouth and or genital ulcers are the

hallmark--along with EN.

> >

> > Love,

> >

> >

> >

>

[Guest guest]

Dana, EN is autoimmune so it made sense to me that he sent you to the rheumatologist. I'm glad your rheumatologist is on the ball. In my case, going gluten free was what took care of it for me. It sounds like you have a lot going on but gluten and autoimmune situations can often be very linked. I was not consuming hardly any gluten when things started so I had trouble believing that could be it, but it has been I had EN back in September 2010 and have not had any recurrences since. I've stayed ompletely gluten free. What you said about the strep I've read on other websites, etc. in relation to the EN.Chantelle

I just wanted to follow up for future sufferers that search these boards for some help. The labs suggest I had strep throat recently, which is crazy because I did not have a fever with it, nor did I go to the doctors and get antibiotics. Makes me wonder if it became rheumatic fever? The symptoms of rheumatic fever are identical to EN and I was having terrible chest pains and arrhythmia.

I also tested positive ANA, so we are doing even more testing. However I am thinking the positive ANA is not related to this and more related to my other previous health conditions. With a positive ANA, it seems like I can rule out Behcet's Disease from what I've read online. I still have ulcers forming in my mouth, so I don't know what that's about.

Chest xray was clear, so no sarcoidosis. I'm getting the labs faxed to me, so I can take a look at them myself. The docs office seemed really hesitant about sending them to me. Every other doc sends me my stuff without issue, so if they won't do it, then I'll go around them and call my PCP. /sigh

I had another really bad EN flare 2 days ago and my foot swelled so much I could not even wear my slippers. It was so very painful, but today is a lot better. All I can do is take each day one by one and pray the next one is better.

--Dana

> >

> > Hi Dana,

> > Also, since you mentioned the mouth ulcers, you might explore Behcets

> > Syndrome

> >

> > http://www.medicinenet.com/behcets_syndrome/article.htm

> >

> > Don't get terrified by the description of it--usually it can be controlled and doesn't affect as much of the body as they mention--they are giving the possible places, but usually the mouth and or genital ulcers are the hallmark--along with EN.

> >

> > Love,

> >

> >

> >

>

[Guest guest]

Hi Everyone,

I just wanted to mention to the new members that EN is not always due to

autoimmune issues. In fact, no one has ever discovered the common denominator

that links all of us together. For some of us it is related to autoimmune issues

like Inflammatory Bowel Disease or Sarcoidosis or RA. For others it is a

reaction to strep or other infection... or a reaction to pregnancy. For others

it is a hypersensitivity or reaction to prescription drugs including birth

control pills. And in about half of us we get only one single bout of EN in our

whole lives. Most of us do go into remission eventually even without any special

treatment. Lots of things we don't know about EN. If you have only had one bout

of EN so far, and it would have gone away anyway---you may be giving credit for

your remission to a treatment that really is not the cure. If you have recurrent

EN and a particular treatment stops it for years, then you may very well have

found the cure for yourself. In that case let me know your story so I can post

it to our " Cured Members Files " on our EN Group website.

Love,

Idiopathic EN for 41 yrs in remission since '08.

https://poems2order.wordpress.com

>

> >

> >

> > I just wanted to follow up for future sufferers that search these boards for

some help. The labs suggest I had strep throat recently, which is crazy because

I did not have a fever with it, nor did I go to the doctors and get antibiotics.

Makes me wonder if it became rheumatic fever? The symptoms of rheumatic fever

are identical to EN and I was having terrible chest pains and arrhythmia.

> >

> > I also tested positive ANA, so we are doing even more testing. However I am

thinking the positive ANA is not related to this and more related to my other

previous health conditions. With a positive ANA, it seems like I can rule out

Behcet's Disease from what I've read online. I still have ulcers forming in my

mouth, so I don't know what that's about.

> >

> > Chest xray was clear, so no sarcoidosis. I'm getting the labs faxed to me,

so I can take a look at them myself. The docs office seemed really hesitant

about sending them to me. Every other doc sends me my stuff without issue, so if

they won't do it, then I'll go around them and call my PCP. /sigh

> >

> > I had another really bad EN flare 2 days ago and my foot swelled so much I

could not even wear my slippers. It was so very painful, but today is a lot

better. All I can do is take each day one by one and pray the next one is

better.

> >

> > --Dana