Another Newbie Here With Questions About Testing....

[Guest guest]

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