We are the research subjects

[Guest guest]

I apologize for stepping on toes with my honest but tactless post about the

donation request. , I applaud you for including my post, criticisms and

all. That tells me a lot about your character. Reading some of the back postings

(which I have JUST started reading) tells me even more, and I appreciate the

effort you have put into getting this group going and keeping it together. I

understand your frustration with getting medical answers to EN.

I went through almost 2 years, 12 years ago, thinking my red shin was everything

from shin splints to broken bone to infection to bug bite to cellulitis to ....?

A dermatologist did a punch biopsy and said it was EN, but didn't tell me

anything about what that was only that it was probably something I was taking

(vitamins and herbal supplements) that caused the EN so there was nothing he

could/would do for me. Considering the other diagnoses I didn't take his much

more seriously or think any more of it. I pretty much gave up on doctors helping

me or giving me more than a hard time for being less than " mainstream. " My EN

eventually went away, for years and I didn't think anything more about it. I've

noticed a few reoccurances of redness but faded quickly, not the severe

inflammation/pain, until recently it flared, in spades. Huge lump in side of

calf, all the redness pain ect ect. Basically much worse, and started around a

big stress time. I thought I had a knot in my leg from dedicated walking program

(to anyone else my walking program would be a joke, for me it was Mt. Everest to

walk slowly for 45 minutes 5/wk, but it seemed to greatly exacerbate chronic

fatigue and mental fog) Right now I'm somewhere between denial and false hope

for it to " just go away. " I can't face going the rounds with doctors again, and

all the expense and treatments that only make things worse. So yes, I am here to

mooch answers.

One thing though, I want to stay in this group. I don't think there is any other

better way for those experiencing this under-researched condition to connect.

The 2,000 plus members in one place is a huge resource. Most doctors probably

rarely see this condition at all, certainly the ones I went to were clueless. My

personal impression of USA medicine is that it is so money money driven, that

unless there are big bucks to be made from a likely treatment protocol, the

medical community will have little interest. But the world is getting smaller

and smaller as communication grows, the internet is the greatest thing since....

well, in my opinion, since electricity. So there is a chance that countries with

medical communities having more truth instead of profit motivation will avail

themselves of this group for doing a study. Or if other research is done, or

being done we at least have a chance to know about it.

, Thank you again for hosting this group. If you would change the wording

on the money request to reflect the concept of " if you want to donate....Please

do so here: " instead of " CAN you donate???! " it would be less pointed and might

turn people off less.

I hope not to post just my fears, but If I find a resolution I will post and add

my experience and solution.

One thing I wonder, if everyone here has either been diagnosed with a

co-condition or is idiopathic EN, how many have tried the 800mg iodine per day

for 1 month? At least I think that was it. Sounds extreme.