Re: Derm Doc Visit

[Guest guest]

Dear M,

I'm so sorry you are having such a bad time, but I am glad your doctor

knows his limits. Saying you are a " tough case " is a nice way of

saying he is out of ideas. Going to the Univ. Conn. sounds like good

plan. So many things can cause EN, and a more experienced doctor may

have a different slant on investigating, or treatment to at least

contain it. A dermatologist would not be as familiar as a doctor

schooled in immunology for example if that is the cause.

I don't have your " case history " yet, so am just throwing out ideas here.

You haven't discussed non drug methods of treatment. By that I mean

diet etc. Sometimes EN is a delayed sensitivity reaction and the only

way to check for that is to carefully note everything you ingest--both

food and drugs, or have a series of allergy tests. Sometimes people

become allergic to foods etc. later in life, so just because you had

no problem years ago, doesn't mean you are still not allergic.

I hope you get some good rest, M. As long as there are new avenues to

explore, you are moving forward.

Love,

[Guest guest]

You have my case history, , it's already in the " files. " But

you're awfully busy researching for all of us, (thank you) so it's

understandable if you don't remember posting it . . . unless I did

something wrong??

I called UCONN . . . they don't have an opening till 7/16! That's

not going to work. Gonna call my derm doc tomorrow and see if he can

pull some strings . . . maybe I should have told them it was an ER

visit? But I'll leave that up to my doc.

My doc was very sweet when he finally spit out that he wanted me to

go to UCONN . . . but it does take a good man to admit when he's out

of answers. I'm sure whatever happens at UCONN will get back to him.

And the prednisone is 20 mgs, 3x/day. No gradual on or off . . .

hope my system can take it!

Thanks again.

M

> Dear M,

> I'm so sorry you are having such a bad time, but I am glad your

doctor

> knows his limits. Saying you are a " tough case " is a nice way of

> saying he is out of ideas. Going to the Univ. Conn. sounds like good

> plan. So many things can cause EN, and a more experienced doctor may

> have a different slant on investigating, or treatment to at least

> contain it. A dermatologist would not be as familiar as a doctor

> schooled in immunology for example if that is the cause.

> I don't have your " case history " yet, so am just throwing out ideas

here.

> You haven't discussed non drug methods of treatment. By that I mean

> diet etc. Sometimes EN is a delayed sensitivity reaction and the

only

> way to check for that is to carefully note everything you ingest--

both

> food and drugs, or have a series of allergy tests. Sometimes people

> become allergic to foods etc. later in life, so just because you had

> no problem years ago, doesn't mean you are still not allergic.

> I hope you get some good rest, M. As long as there are new avenues

to

> explore, you are moving forward.

> Love,

>

[Guest guest]

Dear M,

Is it possible to take the July appointment and have them call you if

they have a cancellation? Sometimes that works if you can get there

quickly. Are you close to the U of Conn?

Hopefully the prednisone will knock out the EN. Let's hope so!

Love,

[Guest guest]

Well . . .it didn't the last two times he tried it . . . but maybe

mixed with the SSKI?? Here's hoping!

Thanks,

M

> Dear M,

> Is it possible to take the July appointment and have them call you

if

> they have a cancellation? Sometimes that works if you can get there

> quickly. Are you close to the U of Conn?

> Hopefully the prednisone will knock out the EN. Let's hope so!

> Love,

>

[Guest guest]

Didn't answer your other questions . . . sorry.

I'll see what the doc says tomorrow about whether he can get me in

sooner . . . if he can't, then I'll call and see if they can put me

on the cancellation list. The UCONN Health Center is in Farmington,

CT . . . over an hour away for me. It's an excellent hospital . . .

I'm checking out their website now . . . see?

http://dermatology.uchc.edu/

Want to read more . . . see if they have anything about EN on it.

Thanks,

M

> Dear M,

> Is it possible to take the July appointment and have them call you

if

> they have a cancellation? Sometimes that works if you can get there

> quickly. Are you close to the U of Conn?

> Hopefully the prednisone will knock out the EN. Let's hope so!

> Love,

>

[Guest guest]

Dear M,

Maybe it is a good tip for us to try and get our blood work done at

the beginning of the week to avoid such problems. I had mine done on

Monday Morning...not during my worse flare-up, but I am supposed to

retake it, to get two readings, so might wait for a bigger flare up

next time if no strep is shown.

I hope the reduced prednisone works out well.

Love,

[Guest guest]

, I never did carry temp with my EN, nor were my legs hot. they were a little warm but not hot.

Sharon

Re: Derm Doc Visit

Dear M and Group,I don't know how a lab can lose blood work, but I sure hope some poorsoul doesn't gets her blood switched with yours and get totallydifferent results--and treatment---because of it. "Shabby show" on thepart of that lab!Glad the legs are improving!I spoke too soon yesterday and found a new lump on the usual leg butin a spot that rarely flares. I wonder if the TED stocking kept thefirst lump from getting as big as it usually does, and since EN issystemic, it had to find another immune cluster--one that hasn'tflared in a long time. Still the leg is cool to the touch and not red,so better off than the typical flare since using the TED.Thanks for showing the doc the printout! The more people and doctorswho know about us the better. You never know who might lead us to aresearcher by word of mouth.Sounds like you're in a great mood inspite of those annoyances! Goodfor you!Have a Great Day, M and Everyone! Love,