Re: a new comer suffering from EN, in need of HELP

January 28, 2006

Yan-

Have you been tested for Streptococcal? Please have your doctor run the two blood strep tests, not just a throat swab. If you did have a strep test and it came back negative....by the time my streptococcal infection caused any symptoms at all (including EN), it had turned into Rheumatic Fever and my throat swab test was negative. It took me 5 months to find out I had strep and Rheumatic Fever. It's a simple blood test and believe me, worth finding out sooner than later!!! With the symptoms you have, I'm thinking it's Streptococcal. Good luck and let us know!! will be answering you with more info I'm sure.

Lorri

January 28, 2006

Hi Yan,

Lorri gave you the exact same advice I would. You mention the sore

throat and that IS a sign of strep infection, one of the most common

causes of EN. You didn't mention if you have had any tests yet, but I

agree with Lorri that the blood strep test is a must.

Too many doctors brush off EN and say it's just a " rash " , but it can

mean many serious disorders are at work. Make sure you get the

diagnostic tests you need. I would get that strep test at the very least.

Love,

January 28, 2006

I just wanted to add something here rebecca, My

daughter had a sore throat at the beginning of her en

(well 4 days before it showed up) and my rhuemy told

me that Sarcoid will also cause a sore throat in some

people. So chest xrays are a good idea too.

--- Strecker

wrote:

> Hi Yan,

> Lorri gave you the exact same advice I would. You

> mention the sore

> throat and that IS a sign of strep infection, one of

> the most common

> causes of EN. You didn't mention if you have had any

> tests yet, but I

> agree with Lorri that the blood strep test is a

> must.

>

> Too many doctors brush off EN and say it's just a

> " rash " , but it can

> mean many serious disorders are at work. Make sure

> you get the

> diagnostic tests you need. I would get that strep

> test at the very least.

>

> Love,

>

__________________________________________________

January 28, 2006

Hi Shanna.

I wasn't aware of the sore throat connection to sarc. That's another

good reason to get a full exam including a chest x-ray. If a doctor

tells you you have EN and no tests are needed, get another doctor. He

could be putting your health at risk.

Love,

January 28, 2006

Hello yan, I have suffered on and off for 18 years with en and the only thing I do is take plenty of bedrest and in the early stages sleep as much as I can, I have many flare ups in a year and they are all different lately my knees and my ankles have been swollen and I have at times been unable to walk, I have tried lots of different medication but nothing seems to work for me but we are all different and what might not work for me might work for you. I find a flannel run in cold water soothing for the lumps sudo cream if you have ever heard of it is good too. Hope you get well soon all the best xueyanox wrote: Dear group,I am happy to join this group and I hope talking with people who are suffering from the same strange thing could help me relieve anxiety. I had a bad cold a

terrible sore throat and fever in early Dec. last year and I was diagnosed to have had EN one week after I recovered from sore throat. I had never heard of EN until then. I was so worried. Then while I was recovering was in my 5th week of EN, I got another sore throat (I caught this cold almost for no reason, I find myself so fragile now) and I've got a new round of EN! It's even more serious than the last one. My two knees are so swollen so hurt I even can't see my knees. I was taking IBuprofen and have just just changed to Dicloflex. I try to rest more, but some time I can't avoid walking (at lesst in my room) a bit. MY legs get very swollen especially in the afternoon and evening and those red spots get very hurt. I wonder if anyone could tell me if it's ture that this desease won't affect the inner organs. Is it that it would recure so easily? Can I really recover by just lying in bed?Any advice, any experience

sharting would be very helpful to me. Thanks! Yan

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January 28, 2006

Yan this is exactly how EN affects me each time. Sharonxueyanox wrote: Dear group,I am happy to join this group and I hope talking with people who are suffering from the same strange thing could help me relieve anxiety. I had a bad cold a terrible sore throat and fever in early Dec. last year and I was diagnosed to have had EN one week after I recovered from sore throat. I had never heard of EN until then. I was so worried. Then while I was recovering was in my 5th week of EN, I got another sore throat (I caught this cold almost for no reason, I find myself so fragile now) and I've got a new round of EN! It's even more serious than the last one. My two knees are so swollen so

hurt I even can't see my knees. I was taking IBuprofen and have just just changed to Dicloflex. I try to rest more, but some time I can't avoid walking (at lesst in my room) a bit. MY legs get very swollen especially in the afternoon and evening and those red spots get very hurt. I wonder if anyone could tell me if it's ture that this desease won't affect the inner organs. Is it that it would recure so easily? Can I really recover by just lying in bed?Any advice, any experience sharting would be very helpful to me. Thanks! Yan

January 29, 2006

Hello, , Thank you so much. Nice to hear from people who are as painful as me. Now there are two huge bumps on my both knees, they are red-purple. I'm so worried I wonder if there's bleeding inside of my knees. I feel difficult to stand up, to walk, to go up/down stairs. I'm so worried I used to be very healthy I'm only 34 I don't know if I won't be as healthy for the rest of my life! I wanna cry.... Yanlinda short wrote: Hello yan, I have suffered on and off for 18 years with en and the only thing I do is take plenty of bedrest and in the early stages sleep as much as I can, I have many flare ups in a year and they are all different lately my knees and my ankles have been swollen and I have at times been unable to walk, I have tried

lots of different medication but nothing seems to work for me but we are all different and what might not work for me might work for you. I find a flannel run in cold water soothing for the lumps sudo cream if you have ever heard of it is good too. Hope you get well soon all the best xueyanox wrote: Dear group,I am happy to join this group and I hope talking with people who are suffering from the same strange thing could help me relieve anxiety. I had a bad cold a terrible sore throat and fever in early Dec. last year and I was diagnosed to have had EN one week after I recovered from sore throat. I had never heard of EN until then. I was so worried. Then while I was recovering was in my 5th week of EN, I got another sore throat (I caught this cold almost for no reason, I find

myself so fragile now) and I've got a new round of EN! It's even more serious than the last one. My two knees are so swollen so hurt I even can't see my knees. I was taking IBuprofen and have just just changed to Dicloflex. I try to rest more, but some time I can't avoid walking (at lesst in my room) a bit. MY legs get very swollen especially in the afternoon and evening and those red spots get very hurt. I wonder if anyone could tell me if it's ture that this desease won't affect the inner organs. Is it that it would recure so easily? Can I really recover by just lying in bed?Any advice, any experience sharting would be very helpful to me. Thanks! Yan Yahoo! Messenger NEW - crystal clear PC to PC calling worldwide with voicemail

January 29, 2006

Hi Yan,

If your doctor did many tests, including the ACE test, he was checking

for sarcoidosis including other related illnesses of EN.

http://www.nlm.nih.gov/medlineplus/ency/article/003567.htm

The ACE level would be elevated with sarc. and other illness, but if

yours was lower, he has reason not to worry about it.

Believe me, we have all had horrible swelling and pain. I imgaine all

of us have had times when we were unable to walk due to EN. This is

not that unusual. If you can't figure out a trugger, you are left with

dealing with the symptoms.

For myself, bedrest is the way to remission. I also use a TEDS

anti-embolism compression stocking to help with swelling. EN is not

one of those quickie illnesses. It can drag on for weeks and months.

Soem of us are chronic, and whiel we have better days, we never feel

completely well. We are all different that way. If you must work in

spite of it, it may take longer to go into remission. If you start

back to activity too quickly it may bring on a relapse--at least from

my own experience.

Try to relax. Get as much rest as you can. Have faith that you will

recover. We have probably all had that dark thought that we might

even lose our legs, but none of us in this group has to my knowledge.

Take heart that you aren't alone, and that we all have different ways

to deal with EN, some of which may help you.

You didn't sent in your " Questionnaire " that I can find. Sometimes

those answers gives us clues to help you.

Love,

January 29, 2006

Hi, , Thank you so much for your email. I feel less lonely now. I read from a article saying that in England only 2.4 people in 10,000 get EN. I don't know why I am so unlucky. I used to think that I was so healthy. I find that bedrest is very effect for reducing inflammation. My legs are much less swollen every morning I get up, but they get worse from the noon onwards. I didn't have much join pain 2 months ago when I first got EN, but this time it's much more painful. I feel so hard to stand up, to walk even for a few steps. I have been taking IBrprofen regularly for more than two months, but it doesn't look very effective. I'm also having a fever, feeling very sick, I don't have to work at the moment, I'm a student. I just need to go to the kitchen to make some simple food for myself, which has been a difficult task in recent 3 days. I wonder if it's true that EN is

just the sympotom of some underlying desease. I read from some medical article that it won't affect the inner organs. I don't know if it's true. I used to be a dancer, now I even can't walk... I'm sorry I haven't done the questionnaire. I'll do it now. Thank you very much for your comfort, . Love, Yan Strecker wrote: Hi Yan,If your doctor did many tests, including the ACE test, he was checkingfor sarcoidosis including other related illnesses of EN. http://www.nlm.nih.gov/medlineplus/ency/article/003567.htmThe ACE level

would be elevated with sarc. and other illness, but ifyours was lower, he has reason not to worry about it. Believe me, we have all had horrible swelling and pain. I imgaine allof us have had times when we were unable to walk due to EN. This isnot that unusual. If you can't figure out a trugger, you are left withdealing with the symptoms. For myself, bedrest is the way to remission. I also use a TEDSanti-embolism compression stocking to help with swelling. EN is notone of those quickie illnesses. It can drag on for weeks and months.Soem of us are chronic, and whiel we have better days, we never feelcompletely well. We are all different that way. If you must work inspite of it, it may take longer to go into remission. If you startback to activity too quickly it may bring on a relapse--at least frommy own experience.Try to relax. Get as much rest as you can. Have faith that you willrecover. We have probably all

had that dark thought that we mighteven lose our legs, but none of us in this group has to my knowledge. Take heart that you aren't alone, and that we all have different waysto deal with EN, some of which may help you.You didn't sent in your "Questionnaire" that I can find. Sometimesthose answers gives us clues to help you.Love,

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January 30, 2006

Hi, , I answered those questions from the "Polls". I wonder if it is the questionnaire you mentioned. Thanks, Yan Strecker wrote: Hi Yan,If your doctor did many tests, including the ACE test, he was checkingfor sarcoidosis including other related illnesses of EN. http://www.nlm.nih.gov/medlineplus/ency/article/003567.htmThe ACE level would be elevated with sarc. and other illness, but ifyours was lower, he has reason not to worry about it. Believe me, we have all had horrible swelling and pain. I imgaine allof us have had times when we were unable to walk due to EN. This isnot that

unusual. If you can't figure out a trugger, you are left withdealing with the symptoms. For myself, bedrest is the way to remission. I also use a TEDSanti-embolism compression stocking to help with swelling. EN is notone of those quickie illnesses. It can drag on for weeks and months.Soem of us are chronic, and whiel we have better days, we never feelcompletely well. We are all different that way. If you must work inspite of it, it may take longer to go into remission. If you startback to activity too quickly it may bring on a relapse--at least frommy own experience.Try to relax. Get as much rest as you can. Have faith that you willrecover. We have probably all had that dark thought that we mighteven lose our legs, but none of us in this group has to my knowledge. Take heart that you aren't alone, and that we all have different waysto deal with EN, some of which may help you.You didn't sent in your

"Questionnaire" that I can find. Sometimesthose answers gives us clues to help you.Love,

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January 31, 2006

Hello Yan sorry I took so long to get back to you but have been away for the weekend, dont get so worried and try to relax as en can get worse due to stress, at the moment I am in the same position as you cannot walk just got over another bout of en was doing well then I slipped a disc yesterday in my back and it did go back in part of the way but trapped my nerve in the process the pain is terrific and believe me I dont take painkillers unless really needed but had to go to the doctors this morning as the pain is keeping me awake and I am starting to look terrible because the pain is getting to me, it has effected both of my legs and my lower back my hips and worst of all it has made me slightly incontinent which the doctor is worried about,if this does not right itself within four weeks she will be sending me to a rhumatologist, at present I am taking tramadol 100mg four times a day and then co-codemol 500mg two four times a day which makes me feel as high as a

kite but does ease the pain. I dont think the lumps on your knees are bleeding beneath the skin it is more likely to be the changes in en as the lumps do change into different colours and do end up looking bruise like,and I do understand what you mean about doctors not many know what en is and the ones who do dont seem to be very educated as to what en is, I have only ever in 18 years seen two doctors who knew about en and then they did not know everything and believe me I have seen loads of doctors, dont forget if you need to chat or have anything bothering you this is why the group is here so that we can help each other. Hope you are feeling better soon try not to get stressed and worry we all know what you are going through. love LIndaYan Xue wrote: Hello, , Thank you so much. Nice to

hear from people who are as painful as me. Now there are two huge bumps on my both knees, they are red-purple. I'm so worried I wonder if there's bleeding inside of my knees. I feel difficult to stand up, to walk, to go up/down stairs. I'm so worried I used to be very healthy I'm only 34 I don't know if I won't be as healthy for the rest of my life! I wanna cry.... Yanlinda short wrote: Hello yan, I have suffered on and off for 18 years with en and the only thing I do is take plenty of bedrest and in the early stages sleep as much as I can, I have many flare ups in a year and they are all different lately my knees and my ankles have been swollen and I have at times been unable to walk, I have tried lots of different medication but nothing seems to work for me but we are all

different and what might not work for me might work for you. I find a flannel run in cold water soothing for the lumps sudo cream if you have ever heard of it is good too. Hope you get well soon all the best xueyanox wrote: Dear group,I am happy to join this group and I hope talking with people who are suffering from the same strange thing could help me relieve anxiety. I had a bad cold a terrible sore throat and fever in early Dec. last year and I was diagnosed to have had EN one week after I recovered from sore throat. I had never heard of EN until then. I was so worried. Then while I was recovering was in my 5th week of EN, I got another sore throat (I caught this cold almost for no reason, I find myself so fragile now) and I've got a new round of EN! It's even more

serious than the last one. My two knees are so swollen so hurt I even can't see my knees. I was taking IBuprofen and have just just changed to Dicloflex. I try to rest more, but some time I can't avoid walking (at lesst in my room) a bit. MY legs get very swollen especially in the afternoon and evening and those red spots get very hurt. I wonder if anyone could tell me if it's ture that this desease won't affect the inner organs. Is it that it would recure so easily? Can I really recover by just lying in bed?Any advice, any experience sharting would be very helpful to me. Thanks! Yan Yahoo! Messenger NEW - crystal clear PC to PC calling worldwide with voicemail

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January 31, 2006

Hi ,

Sorry to hear that you reinjured your back. I hope it comes around

quickly that you will feel better soon.

I think that one of the lessons I have been learning from EN is to

keep a cool head and avoid stress and upset. In my own experience

stress just makes everything worse.

My Dad learned this a long time ago when he served in WWII. After he

returned form the war, he suffered shell shock --today they call it

post traumatic stress disorder. I was born after he returned from the

war and married. He rarely got upset. He told me that he had lived

through the War and that nothing compared with that, so he could

handle anything. He is now 95 years old and to this day I have rarely

seen him upset. Certainly his life had plenty of stress, but he is one

of the finest examples of how to handle it I have ever seen.

Your advice to Yan was valuable to me as well.

Love,

January 31, 2006