Re: To say I'm frustrated is an understatement

[Guest guest]

Kristy,

I am fairly new to this group too...and like you I found it while doing research to see what the " heck " was going on with my body. I have undiagnosed EN, my doctor is sure I just bump my legs and don't realize it. Even though every so called " bump " flair up looks more like a spider bite each time. Can you explain your eye condition a little more? Since my EN I have been having small painful bumps appear on and around my eyes and eyelids.

On the subject of aspartame, what an interesting thought. I used to get severe headaches and I was told it was attributed to using Equal. I drink ALOT of Crystal Light because it is made with Splenda, but maybe there is something to that. If you get more information, please pass it on.

As far as your docotr is concerned...here is my new approach. " Doc, I know my own body, I have been in it for 42 years, something just isn't right and I need you to help me understand it and find out what's wrong. I am not crazy, but I am determined " My doc seems to be a little better about beleiving me now. He wants to send me to an allergist for a few things that keep happening to me that he says are Hyper-reactions within my body. He said to think of patient A and patient B both take a walk in the woods...patient A rubs their arm on a vine of poison ivy and gets a slight rash, Patient B just walks through the woods without touching anything and had such a severe reaction to the ivy that they were hospitalized. My doc said it used to be believed that exposure to these " agents " would build up a resisitance...kind of like the flu shot. Well, he says now the medical community is looking at our own immune system's " overeactions " as a more detailed problem.

That is how I got here, to this group. I had so many issues and the most painful at the time was my blood red, hot swollen leg/calf. At first my doc went the " you bumped it route " and now he is thinking some of my symptoms are related.....WaaaHooooo! Finally!

Anyway, good luck with your doc...Shins up and I do believe there is a good reason we have all come together....this site has already been a great positive experience for me. Just knowing I am not the only one has made a difference. Let me know what you find out about the aspartame.

Best Wishes!

Jhan (Jan) Price

Brief synopsis. I've had EN (still undiagnosed -- soon to change) since my 20's (I'm 40). Several years ago I developed a condition in my eyes called uveitis. I've been treated off and on for flairs for the past 3 years. 2 years ago I developed a case of PG on my stomach. Dermatologist diagnosed it and said he'd only seen it one other time in his practice. Every test in the book has been run on me blood wise to rule out anything systemic. I have asked on numerous ocassions whether all of these conditions are related and the doctors just shrug. My ophtamologist finally sent me to a retinal specialist. The retinal specialist ordered a chest x-ray to rule out a sarcoid. (I was doing research on sarcoidosis and that is how I found this group). Went to the specialist again today. The x-

ray came back clear so no sarcoidosis. I asked him specifically if he wasn't concerned that I had all of these things that related (you know -- walk like a duck, talk like a duck -- LET'S CALL IT A DUCK!). His answer was " Well, I just think you are one of those people that gets stuff. " WHAT????????At this point I have no idea what to do or where to go. I'm thinking of calling my PCP and sitting her down and talking to her about all of this stuff and seeing if she can.....what? Refer me to another specialist? What do I do?This is all very frustrating. While I don't want to be " sick " , I want to know why all this stuff is happening to me??By the way, and this is very OT -- have any of you ever heard that a sensitivity to aspartame might cause some of this stuff? I only ask because I am addicted to diet cokes, and my original eye doc told me that it could cause some problems with my vision because of the aspartame. I've never jumped on that band wagon, but I'm beginning to wonder.Thanks guys. It's nice to come someplace where I can vent and possibly get answers to all this.-Kristy

[Guest guest]

" By the way, and this is very OT -- have any of you ever heard that a

sensitivity to aspartame might cause some of this stuff? I only ask

because I am addicted to diet cokes, and my original eye doc told me

that it could cause some problems with my vision because of the

aspartame. I've never jumped on that band wagon, but I'm beginning

to wonder. "

Hi Kristy,

I have read a lot about the " aspartame " related health issues because

of friends and relatives that have had health problems. Here is a web

site that gives a lot of information about the health of our medical

situation in today's world:

http://www.newstarget.com/aspartame.html

I have a cousin that was having a lot of MS symptoms. Her doctors

told her they could no say for sure that is what was wrong with her.

I asked her if she drank a lot of diet sodas because at the time she

had a can in her hand. Her answer to me was that she has a can of

soda always within reach and drinks it all the time. I suggested she

do some research on the aspartame and maybe she would want to stop

ingesting anything with aspartame. I saw her again about a year later

and asked how she was doing. She told me after what she had found out

on line about aspartame she quite drinking diet sodas and had not had

any more MS symptoms. This was several years ago and she has been

symptom free since.

I hope this information helps you, and that you feel better soon.

Love,

Co-Moderator

Erythema Nodosum Group

Idiopathic EN 2002

[Guest guest]

I have had two of those bumps you mentioned on my eye. The first came just prior to my first breakout of en. I thought it was just a dry patch and tried not to scratch it. The second one I got during the worst breakout I have had thus far. The bump was more pronounced and I was wiser by then. Yes, we can get the bumps in our eyes. It seems less common but clearly nothing to mess with. I seem to be in remission now after a ten week bout (my first). I still have hard patches on my calves and thigh but the discoloration seems to be slowly fading. I had no new bumps on my recent two week trip to Israel. For that I am very grateful! I am having an ultrasound done on my gall bladder to see if I am suffering from gallstones (someone else listed that in their symptoms). The doctor says that gall bladder attacks are unrelated to en but if they stress my body out enough to cause it to react with en then I don't see it as unrelated. I thought my legs would never calm down. Thank God

for His grace!Kim A.Jhan Price wrote: Kristy, I am fairly new to this group too...and like you I found it while doing research to see what the "heck" was going on with my body. I have undiagnosed EN, my doctor is sure I just bump my legs and don't realize it. Even though every so called "bump" flair up looks more like a spider bite each time. Can you explain your eye condition a little more? Since my EN I have been having small painful

bumps appear on and around my eyes and eyelids. On the subject of aspartame, what an interesting thought. I used to get severe headaches and I was told it was attributed to using Equal. I drink ALOT of Crystal Light because it is made with Splenda, but maybe there is something to that. If you get more information, please pass it on. As far as your docotr is concerned...here is my new approach. "Doc, I know my own body, I have been in it for 42 years, something just isn't right and I need you to help me understand it and find out what's wrong. I am not crazy, but I am determined" My doc seems to be a little better about beleiving me now. He wants to send me to an allergist for a few things that keep happening to me that he says are Hyper-reactions within my body. He said to think of patient A and patient B both take a walk in the woods...patient A rubs their

arm on a vine of poison ivy and gets a slight rash, Patient B just walks through the woods without touching anything and had such a severe reaction to the ivy that they were hospitalized. My doc said it used to be believed that exposure to these "agents" would build up a resisitance...kind of like the flu shot. Well, he says now the medical community is looking at our own immune system's " overeactions" as a more detailed problem. That is how I got here, to this group. I had so many issues and the most painful at the time was my blood red, hot swollen leg/calf. At first my doc went the "you bumped it route" and now he is thinking some of my symptoms are related.....WaaaHooooo! Finally! Anyway, good luck with your doc...Shins up and I do believe there is a good reason we have all come together....this site has already been a great positive

experience for me. Just knowing I am not the only one has made a difference. Let me know what you find out about the aspartame. Best Wishes! Jhan (Jan) Price Brief synopsis. I've had EN (still undiagnosed -- soon to change) since my 20's (I'm 40). Several years ago I developed a condition in my eyes called uveitis. I've been treated off and on for flairs for the past 3 years. 2 years ago I developed a case of PG on my stomach. Dermatologist diagnosed it and said he'd only seen it one other time in his practice. Every test in the book has

been run on me blood wise to rule out anything systemic. I have asked on numerous ocassions whether all of these conditions are related and the doctors just shrug. My ophtamologist finally sent me to a retinal specialist. The retinal specialist ordered a chest x-ray to rule out a sarcoid. (I was doing research on sarcoidosis and that is how I found this group). Went to the specialist again today. The x- ray came back clear so no sarcoidosis. I asked him specifically if he wasn't concerned that I had all of these things that related (you know -- walk like a duck, talk like a duck -- LET'S CALL IT A DUCK!). His answer was "Well, I just think you are one of those people that gets stuff."WHAT????????At this point I have no idea what to do or where to go. I'm thinking of calling my PCP and sitting her down and talking to her about all of this stuff and seeing if she can.....what? Refer me to another specialist? What do I do?This is all very frustrating. While I don't want to be "sick", I want to know why all this stuff is happening to me??By the way, and this is very OT -- have any of you ever heard that a sensitivity to aspartame might cause some of this stuff? I only ask because I am addicted to diet cokes, and my original eye doc told me that it could cause some problems with my vision because of the aspartame. I've never jumped on that band wagon, but I'm beginning to wonder.Thanks guys. It's nice to come someplace where I can vent and possibly get answers to all this.-Kristy

[Guest guest]

Thanks Jan. That is the approach I'm going to take. I'm going back

to my PCP and just have a sit down. She's a nice person and very

understanding. I think she'll listen if I point her in a direction.

I'll let you know if I find out anything on Aspartame. I'm

sensitive to Splenda too. It gives me headaches.

-Kristy

> >

> > Brief synopsis. I've had EN (still undiagnosed -- soon to

change)

> > since my 20's (I'm 40). Several years ago I developed a

condition in

> > my eyes called uveitis. I've been treated off and on for flairs

for

> > the past 3 years. 2 years ago I developed a case of PG on my

> > stomach. Dermatologist diagnosed it and said he'd only seen it

one

> > other time in his practice. Every test in the book has been run

on

> > me blood wise to rule out anything systemic. I have asked on

> > numerous ocassions whether all of these conditions are related

and

> > the doctors just shrug. My ophtamologist finally sent me to a

> > retinal specialist. The retinal specialist ordered a chest x-ray

to

> > rule out a sarcoid. (I was doing research on sarcoidosis and

that is

> > how I found this group). Went to the specialist again today. The

x-

> > ray came back clear so no sarcoidosis. I asked him specifically

if

> > he wasn't concerned that I had all of these things that related

(you

> > know -- walk like a duck, talk like a duck -- LET'S CALL IT A

> > DUCK!). His answer was " Well, I just think you are one of those

> > people that gets stuff. "

> >

> > WHAT????????

> >

> > At this point I have no idea what to do or where to go. I'm

thinking

> > of calling my PCP and sitting her down and talking to her about

all

> > of this stuff and seeing if she can.....what? Refer me to another

> > specialist? What do I do?

> >

> > This is all very frustrating. While I don't want to be " sick " , I

> > want to know why all this stuff is happening to me??

> >

> > By the way, and this is very OT -- have any of you ever heard

that a

> > sensitivity to aspartame might cause some of this stuff? I only

ask

> > because I am addicted to diet cokes, and my original eye doc

told me

> > that it could cause some problems with my vision because of the

> > aspartame. I've never jumped on that band wagon, but I'm

beginning

> > to wonder.

> >

> > Thanks guys. It's nice to come someplace where I can vent and

> > possibly get answers to all this.

> >

> > -Kristy

> >

> >

> >

>

[Guest guest]

Thanks . I think I'm going to try that route and wean myself

off the diet cokes. I know it's bad for me anyway. I'd probably

lose a lot of weight if I'd just drink water (duh -- ha ha!).

Thanks again!

-Kristy

> " By the way, and this is very OT -- have any of you ever heard

that a

> sensitivity to aspartame might cause some of this stuff? I only ask

> because I am addicted to diet cokes, and my original eye doc told

me

> that it could cause some problems with my vision because of the

> aspartame. I've never jumped on that band wagon, but I'm beginning

> to wonder. "

>

> Hi Kristy,

>

> I have read a lot about the " aspartame " related health issues

because

> of friends and relatives that have had health problems. Here is a

web

> site that gives a lot of information about the health of our

medical

> situation in today's world:

>

> http://www.newstarget.com/aspartame.html

>

> I have a cousin that was having a lot of MS symptoms. Her doctors

> told her they could no say for sure that is what was wrong with

her.

> I asked her if she drank a lot of diet sodas because at the time

she

> had a can in her hand. Her answer to me was that she has a can of

> soda always within reach and drinks it all the time. I suggested

she

> do some research on the aspartame and maybe she would want to stop

> ingesting anything with aspartame. I saw her again about a year

later

> and asked how she was doing. She told me after what she had found

out

> on line about aspartame she quite drinking diet sodas and had not

had

> any more MS symptoms. This was several years ago and she has been

> symptom free since.

>

> I hope this information helps you, and that you feel better soon.

>

> Love,

>

>

> Co-Moderator

> Erythema Nodosum Group

> Idiopathic EN 2002

>

[Guest guest]

Dear Group,Reading today's emails I can feel your frustration. And all of you have every right to feel that way. We are not stupid. We know when something is wrong. For a doctor to blow you off is the height of arrogance. But what gets me angry are the doctors who know little and make up some jerky reason like that you are overweight, and then prescribe a treatment that may even be harmful. Overweight is not an EN trigger. Quite a few in the group are thin, even underweight. Some dr's. blame eveything on overweight. It's a lot easier than doing research and testing for the real problem. If overweight were an EN trigger, I would think EN would not be as rare as it is.Sometimes it takes getting to the end of your rope to build up the courage to question your doctor and fight to find the proper diagnosis. Getting upset is the last thing I would recommend knowing how my own body reacts to stress, but enough is enough, and if your dr. is not willing to work with you to get you better, it is, in my opinion, time to find another doctor. S/he may not be an expert in EN, and to be honest few doctors have seenEN that often, but s/he has to be willing to listen and learn and respect you. This is MY vent for the day. Love,idio. EN '68

[Guest guest]

I agree. I am meeting me my PCP next week for exactly this reason.

I'm going to go to her with my information that I have found (not the

doctors) and see what she says. If she doesn't listen or blows me

off, I will find another doctor.

Thanks again!

-Kristy

>

> Dear Group,

> Reading today's emails I can feel your frustration. And all of you

have

> every right to feel that way. We are not stupid. We know when

something

> is wrong. For a doctor to blow you off is the height of arrogance.

But

> what gets me angry are the doctors who know little and make up some

> jerky reason like that you are overweight, and

> then prescribe a treatment that may even be harmful.

>

> Overweight is not an EN trigger. Quite a few in the group are thin,

even

> underweight. Some dr's. blame eveything on overweight. It's a lot

easier

> than doing research and testing for the real problem. If overweight

were

> an EN trigger, I would think EN would not be as rare as it is.

>

> Sometimes it takes getting to the end of your rope to build up the

> courage to question your doctor and fight to find the proper

diagnosis.

> Getting upset is the last thing I would recommend knowing how my own

> body reacts to stress, but enough is enough, and if your dr. is not

> willing to work with you to get you better, it is, in my opinion,

time

> to find another doctor. S/he may not be an expert in EN, and to be

> honest few doctors have seenEN that often, but s/he has to be

willing to

> listen and learn and respect you.

>

> This is MY vent for the day.

>

> Love,

>

> idio. EN '68

>