Re: TLC's Mystery Diagnosis?/contact info

[Guest guest]

Dear Lorri and Group,This sounded familiar so I searched my emails and found this:**********

Did you spend years searching for a diagnosis before finding one? Did

you see doctor after doctor, desperately looking for an answer to the

question "what is wrong with me?" If so, your story may be of interest

for the new Discovery Health Channel series Mystery Diagnosis.

You must:

* have spent months or years searching for a correct diagnosis;

* seen multiple doctors and gotten multiple diagnoses; and

* have ultimately reached a diagnosis that both you and your

physician are satisfied with.

The eventual diagnosis doesn't have to be rare or complicated, but the

"journey" to solving the mystery should be tricky.

If this situation sounds familiar to you, and you are eager to tell

your story, contact Aimee , x136. *******Several of our members did contact Aimee in Sept., 2005, and she said she'd consider it. Well, maybe she needs a little "reminder". This program requires a "happy ending", so Aimee would want to do a story on those who were finally properly diagnosed with EN and then went on to discover why and went into remission with appropriate treatment. With most disorders figuring out the diagnosis is the main problem [as there are appropriate treatments]. With EN it's just the beginning of the mystery.Love,idiopathic EN "68

[Guest guest]

Well, I obtained access to a computer so I got to read the e-mails. I'm going through some pain still. I can't get my foot into any of my shoes. It's going on two months - maybe a little more, I've lost track. This flare-up has been the worst in years. I don't know what I could do different. I took a Benadryl this morning just in case it was allergy related. So far, no change. As a matter of fact, my foot, ankle and leg up to my knee are swollen almost double its original side. The plane ride last night was horror. I couldn't move my legs for three hours and it hurt so bad. Not to mention when there is turbulence, I get really scared. Just like w/ a roller coaster, when the plane goes up and down (drops in altitude), it really hurts my inside. All of my muscles contract and it causes physical pain. I'm not scared that the plane is going to crash, I'm scared of the pain my body's going to cause me. By the time the plane ride was over, I was exhausted. My leg is now cramping - I guess because of the swelling. I'm getting sharp pains in my knees and ankle as well as feeling my leg swell. I'm drinking water, I took Advil, I took Benadryl. I put ice on it. I kept my leg elevated, but the minute I put it down, it begins to swell again. I just don't know what to do - nothing is working to control the swelling. My other joints are hurting as well, my fingers, my toes, my elbow and knees. Its worse on the left side than the right but my right leg has now started to swell a little too. I really wish I knew what to do - it just makes the quality of life suck. I miss it being in remission.

Tawnya, IdioEN ' 97