Re: New EN diagnosis 1 week ago with rare EN locations and MASSIVE ankle swelling

December 9, 2010

Oh ,

What you have described is like a mirror image of my worst outbreak five years ago, including the massive and excruciating ankle pain and swelling. I also have clouding on my lungs (often termed fibrosis, inflammation, granulomas etc) and even though the doctors know I have an auto immune problem, they have never diagnosed exactly what it is. In the last month my EN and swollen ankles have returned and just this last 24 hours I have developed the burning and pain in my chest, along with a nasty deep cough, much like when I get pneumonia. I get pneumonia when the EN is out of control. The only drug that has ever helped me is prednisone in large doses, and that is after 12 years of trialing everything. I do hope you find an answer, I am often tested for Ross River Fever, which sounds like your Valley fever, always negative. I cant offer much help as it seems you and I are in the same predicament.

Regards

Trudi (in Aus)

New EN diagnosis 1 week ago with "rare" EN locations and MASSIVE ankle swelling

I would first like to add that I a detest modern medicine. I don't take pain pills, I don't like antibiotics and will refrain as long as possible to take them. I, instead, turn to healing foods and herbs. I am 30, female, live in Central California, am a Psychologist and also have psoriasis. Additionally, and the hardest thing for me right now, I am a runner. I completed a half marathon just 4 weeks ago. I have taken maybe 4 aspirin in the last 2 days due to not being able to handle the pain any longer. I have also been eating a VERY rich diet of raw and anti inflammatory foods and a lot of natural herbs. My story: Much like everyone else's beginning symptoms, lethargy, general malaise, etc, I thought I was just coming down with the flu, until the night sweats started for many nights in a row. I also had developed a very, very stiff neck around this time and thought it was still just a flu bug. I woke about 2 weeks ago and had sharp right chest pain. Not like a heart attach, but more like pneumonia. So, off to Urgent Care I went. I was prescribed an antibiotic for pleuricy (he did not do any xrays or tests). The antibiotic was Cefdinir (generic for Omnicef). I took it 2x day for 4 days and went to my Dr. when I was still not feeling good. The night sweats had continued, I had a raging headache and started getting the infamous little red bumps on my knee caps. After one look they said I probably didn't have pneumonia, but Valley Fever. Valley Fever is a central California spore that lodges into the lungs and can disseminate and be lethal. Great. So, they prescribed me a "better" antibiotic, which I did not take because antibiotics are not useful for this fungal infection. The doctors pulled blood a week ago (when the bumps started) and I should expect to find out in another week if I have been exposed to Valley Fever. Back to the EN, the topic of this group. The nodules grew and grew and multiplied like rabbits, all over my upper thighs, knees and shins. I found a few on my arms, elbows and wrists and one on the side of my neck. Painful, moderately, but debilitating? Not yet. This was Thursday last week. Friday they grew bigger, and more. Saturday it was a bit painful to walk on, and by Sunday morning I had a swollen ankle. I had read this is common with EN. I was getting around by holding onto the walls in the house, propping myself down and not moving at all other than the bathroom and to bed. Luckily, my fiance has been doing everything. By Sunday night the other ankle had swollen bigger than the first. I had, what looked like, a camel's hump on my shin that I supposed was a bout 4 of those nodules crammed together. It was HUGE. I noticed the clumping in a few areas on my body. My legs looked like (and grossly felt like) someone shoved many sized pebbles and dirt into a big sock. The ankle has taken on a new identity at this point. For the last 3 days I have not been able to walk on either ankle. The nodules are still lingering around, but I am 100% effected by the ankles, which I have none of at this point. My ankles are the size of my thigh. In my worst, I was scooting on my butt to the bathroom, until my wrists started swelling. We finally got a wheelchair for me yesterday. I have been to several places. They know its EN, but they have "gasp, never seen anything like this before." I have had numerous medical staff come into my room to check out my ankles and legs. I feel like a freak show. After all of this, I am wondering if anyone else has had this ankle experience. I can tolerate a lot of pain, but this feels like broken ankles that I am forced to walk on. At this point, I still do not know what caused it. I do have some clouding in my lung, so we are ruling out a few things with xrays and now ct scans. I would also be curious to know if anyone has been diagnosed with Valley Fever before. And, most importantly, has anyone had this BEFORE becoming pregnant for the first time and had it come back during pregnancy. I am terrified that this will surface during pregnancy, even though it was not due to pregnancy the first time. Thank you so much for your time. I am so impressed with the wealth of knowleged in this forum. The research is so scarce and it's so comforting to see other people's experiences so I don't feel like such a side show freak!

December 9, 2010

It's very interesting you posting about Valley Fever. Though I have never been tested I have thought about it. Let me know when you get the results backI had pleurisy when I was younger. Several times. I am very familiar with lumps merging and forming a huge lump. The lumps on the ankles are very painful. One thing I have learned is that when they start using support hose are key to helping circulation and avoiding too much pain. However, Valley Fever produces lumps as well as severe join pain. You also need to be test for meningitis with Valley Fever. Did they do that? I'm no doctor, but all the symptoms you described seem to be classic Valley Fever.When I had my first EN outbreak I was 13, 14 and I didn't have all the other symptoms you are describing. It was just malaise, tired, low grade fever and lumps. All I can tell you is what helps me with pain and swelling management.I ice my legs. I also wrap paper towels soaked in Braggs Organic Apple Cider Vinegar with the mother in it (health food store). Don't use regular vinegar it won't work. This helps with the burning and swelling. I elevate my legs as much as possible. I take Vitalzym Systemic enzymes with really helps as well with pain and inflammation and cleansing the blood from toxins.http://www.energeticnutrition.com/vitalzym/vitalzym.htmlplease let us know your results on your testing.best,ml ML GemmillEN 1975 I would first like to add that I a detest modern medicine. I don't take pain pills, I don't like antibiotics and will refrain as long as possible to take them. I, instead, turn to healing foods and herbs. I am 30, female, live in Central California, am a Psychologist and also have psoriasis. Additionally, and the hardest thing for me right now, I am a runner. I completed a half marathon just 4 weeks ago. I have taken maybe 4 aspirin in the last 2 days due to not being able to handle the pain any longer. I have also been eating a VERY rich diet of raw and anti inflammatory foods and a lot of natural herbs. My story: Much like everyone else's beginning symptoms, lethargy, general malaise, etc, I thought I was just coming down with the flu, until the night sweats started for many nights in a row. I also had developed a very, very stiff neck around this time and thought it was still just a flu bug. I woke about 2 weeks ago and had sharp right chest pain. Not like a heart attach, but more like pneumonia. So, off to Urgent Care I went. I was prescribed an antibiotic for pleuricy (he did not do any xrays or tests). The antibiotic was Cefdinir (generic for Omnicef). I took it 2x day for 4 days and went to my Dr. when I was still not feeling good. The night sweats had continued, I had a raging headache and started getting the infamous little red bumps on my knee caps. After one look they said I probably didn't have pneumonia, but Valley Fever. Valley Fever is a central California spore that lodges into the lungs and can disseminate and be lethal. Great. So, they prescribed me a "better" antibiotic, which I did not take because antibiotics are not useful for this fungal infection. The doctors pulled blood a week ago (when the bumps started) and I should expect to find out in another week if I have been exposed to Valley Fever. Back to the EN, the topic of this group. The nodules grew and grew and multiplied like rabbits, all over my upper thighs, knees and shins. I found a few on my arms, elbows and wrists and one on the side of my neck. Painful, moderately, but debilitating? Not yet. This was Thursday last week. Friday they grew bigger, and more. Saturday it was a bit painful to walk on, and by Sunday morning I had a swollen ankle. I had read this is common with EN. I was getting around by holding onto the walls in the house, propping myself down and not moving at all other than the bathroom and to bed. Luckily, my fiance has been doing everything. By Sunday night the other ankle had swollen bigger than the first. I had, what looked like, a camel's hump on my shin that I supposed was a bout 4 of those nodules crammed together. It was HUGE. I noticed the clumping in a few areas on my body. My legs looked like (and grossly felt like) someone shoved many sized pebbles and dirt into a big sock. The ankle has taken on a new identity at this point. For the last 3 days I have not been able to walk on either ankle. The nodules are still lingering around, but I am 100% effected by the ankles, which I have none of at this point. My ankles are the size of my thigh. In my worst, I was scooting on my butt to the bathroom, until my wrists started swelling. We finally got a wheelchair for me yesterday. I have been to several places. They know its EN, but they have "gasp, never seen anything like this before." I have had numerous medical staff come into my room to check out my ankles and legs. I feel like a freak show. After all of this, I am wondering if anyone else has had this ankle experience. I can tolerate a lot of pain, but this feels like broken ankles that I am forced to walk on. At this point, I still do not know what caused it. I do have some clouding in my lung, so we are ruling out a few things with xrays and now ct scans. I would also be curious to know if anyone has been diagnosed with Valley Fever before. And, most importantly, has anyone had this BEFORE becoming pregnant for the first time and had it come back during pregnancy. I am terrified that this will surface during pregnancy, even though it was not due to pregnancy the first time. Thank you so much for your time. I am so impressed with the wealth of knowleged in this forum. The research is so scarce and it's so comforting to see other people's experiences so I don't feel like such a side show freak!

December 10, 2010

I didn’t realize valley fever produces lumps as well as severe joint pain......

I had lumps and that joint pain but all of that is gone now.

I live in an area where Valley Fever seems common

chantelle

It's very interesting you posting about Valley Fever. Though I have never been tested I have thought about it. Let me know when you get the results back

I had pleurisy when I was younger. Several times.

I am very familiar with lumps merging and forming a huge lump. The lumps on the ankles are very painful. One thing I have learned is that when they start using support hose are key to helping circulation and avoiding too much pain.

However, Valley Fever produces lumps as well as severe join pain. You also need to be test for meningitis with Valley Fever. Did they do that? I'm no doctor, but all the symptoms you described seem to be classic Valley Fever.

When I had my first EN outbreak I was 13, 14 and I didn't have all the other symptoms you are describing. It was just malaise, tired, low grade fever and lumps.

All I can tell you is what helps me with pain and swelling management.

I ice my legs. I also wrap paper towels soaked in Braggs Organic Apple Cider Vinegar with the mother in it (health food store). Don't use regular vinegar it won't work. This helps with the burning and swelling. I elevate my legs as much as possible.

I take Vitalzym Systemic enzymes with really helps as well with pain and inflammation and cleansing the blood from toxins.

http://www.energeticnutrition.com/vitalzym/vitalzym.html

please let us know your results on your testing.

best,

ml

ML Gemmill

EN 1975

I would first like to add that I a detest modern medicine. I don't take pain pills, I don't like antibiotics and will refrain as long as possible to take them. I, instead, turn to healing foods and herbs. I am 30, female, live in Central California, am a Psychologist and also have psoriasis. Additionally, and the hardest thing for me right now, I am a runner. I completed a half marathon just 4 weeks ago.

I have taken maybe 4 aspirin in the last 2 days due to not being able to handle the pain any longer. I have also been eating a VERY rich diet of raw and anti inflammatory foods and a lot of natural herbs.

My story:

Much like everyone else's beginning symptoms, lethargy, general malaise, etc, I thought I was just coming down with the flu, until the night sweats started for many nights in a row. I also had developed a very, very stiff neck around this time and thought it was still just a flu bug. I woke about 2 weeks ago and had sharp right chest pain. Not like a heart attach, but more like pneumonia. So, off to Urgent Care I went. I was prescribed an antibiotic for pleuricy (he did not do any xrays or tests). The antibiotic was Cefdinir (generic for Omnicef). I took it 2x day for 4 days and went to my Dr. when I was still not feeling good. The night sweats had continued, I had a raging headache and started getting the infamous little red bumps on my knee caps. After one look they said I probably didn't have pneumonia, but Valley Fever. Valley Fever is a central California spore that lodges into the lungs and can disseminate and be lethal. Great. So, they prescribed me a " better " antibiotic, which I did not take because antibiotics are not useful for this fungal infection. The doctors pulled blood a week ago (when the bumps started) and I should expect to find out in another week if I have been exposed to Valley Fever.

Back to the EN, the topic of this group. The nodules grew and grew and multiplied like rabbits, all over my upper thighs, knees and shins. I found a few on my arms, elbows and wrists and one on the side of my neck. Painful, moderately, but debilitating? Not yet. This was Thursday last week. Friday they grew bigger, and more. Saturday it was a bit painful to walk on, and by Sunday morning I had a swollen ankle. I had read this is common with EN. I was getting around by holding onto the walls in the house, propping myself down and not moving at all other than the bathroom and to bed. Luckily, my fiance has been doing everything. By Sunday night the other ankle had swollen bigger than the first. I had, what looked like, a camel's hump on my shin that I supposed was a bout 4 of those nodules crammed together. It was HUGE. I noticed the clumping in a few areas on my body. My legs looked like (and grossly felt like) someone shoved many sized pebbles and dirt into a big sock. The ankle has taken on a new identity at this point. For the last 3 days I have not been able to walk on either ankle. The nodules are still lingering around, but I am 100% effected by the ankles, which I have none of at this point. My ankles are the size of my thigh. In my worst, I was scooting on my butt to the bathroom, until my wrists started swelling. We finally got a wheelchair for me yesterday.

I have been to several places. They know its EN, but they have " gasp, never seen anything like this before. " I have had numerous medical staff come into my room to check out my ankles and legs. I feel like a freak show.

After all of this, I am wondering if anyone else has had this ankle experience. I can tolerate a lot of pain, but this feels like broken ankles that I am forced to walk on.

At this point, I still do not know what caused it. I do have some clouding in my lung, so we are ruling out a few things with xrays and now ct scans.

I would also be curious to know if anyone has been diagnosed with Valley Fever before.

And, most importantly, has anyone had this BEFORE becoming pregnant for the first time and had it come back during pregnancy. I am terrified that this will surface during pregnancy, even though it was not due to pregnancy the first time.

Thank you so much for your time. I am so impressed with the wealth of knowleged in this forum. The research is so scarce and it's so comforting to see other people's experiences so I don't feel like such a side show freak!

December 10, 2010

Hi Trudy,

I truly appreciate your response, even if you can't prescribe me something that

will make it all go away. At this point, knowing that others have felt this way

before is so comforting.

I am in a waiting period to get back results to determine what it is and go from

there.

The doctors also told me this is a major autoimmune response.

I have been reading a lot about prednisone, which seems to help some and not

help others. I am holding off on that until I can't stand it any longer.

You mentioned you get pneumonia after an EN bout? That is very interesting, as I

am trying to determine which symptoms have come first.

I was born in Brisbane and lived there until I was 10. I sure miss Australia!

Thank you for your response, I hope we can all find a remedy for this.

>

> Oh ,

> What you have described is like a mirror image of my worst outbreak five years

ago, including the massive and excruciating ankle pain and swelling. I also

have clouding on my lungs (often termed fibrosis, inflammation, granulomas etc)

and even though the doctors know I have an auto immune problem, they have never

diagnosed exactly what it is. In the last month my EN and swollen ankles have

returned and just this last 24 hours I have developed the burning and pain in my

chest, along with a nasty deep cough, much like when I get pneumonia. I get

pneumonia when the EN is out of control. The only drug that has ever helped me

is prednisone in large doses, and that is after 12 years of trialing everything.

I do hope you find an answer, I am often tested for Ross River Fever, which

sounds like your Valley fever, always negative. I cant offer much help as it

seems you and I are in the same predicament.

>

> Regards

> Trudi (in Aus)

> New EN diagnosis 1 week ago with " rare " EN

locations and MASSIVE ankle swelling

>

> I would first like to add that I a detest modern medicine. I don't take pain

pills, I don't like antibiotics and will refrain as long as possible to take

them. I, instead, turn to healing foods and herbs. I am 30, female, live in

Central California, am a Psychologist and also have psoriasis. Additionally, and

the hardest thing for me right now, I am a runner. I completed a half marathon

just 4 weeks ago.

> I have taken maybe 4 aspirin in the last 2 days due to not being able to

handle the pain any longer. I have also been eating a VERY rich diet of raw and

anti inflammatory foods and a lot of natural herbs.

> My story:

> Much like everyone else's beginning symptoms, lethargy, general malaise,

etc, I thought I was just coming down with the flu, until the night sweats

started for many nights in a row. I also had developed a very, very stiff neck

around this time and thought it was still just a flu bug. I woke about 2 weeks

ago and had sharp right chest pain. Not like a heart attach, but more like

pneumonia. So, off to Urgent Care I went. I was prescribed an antibiotic for

pleuricy (he did not do any xrays or tests). The antibiotic was Cefdinir

(generic for Omnicef). I took it 2x day for 4 days and went to my Dr. when I was

still not feeling good. The night sweats had continued, I had a raging headache

and started getting the infamous little red bumps on my knee caps. After one

look they said I probably didn't have pneumonia, but Valley Fever. Valley Fever

is a central California spore that lodges into the lungs and can disseminate and

be lethal. Great. So, they prescribed me a " better " antibiotic, which I did not

take because antibiotics are not useful for this fungal infection. The doctors

pulled blood a week ago (when the bumps started) and I should expect to find out

in another week if I have been exposed to Valley Fever.

> Back to the EN, the topic of this group. The nodules grew and grew and

multiplied like rabbits, all over my upper thighs, knees and shins. I found a

few on my arms, elbows and wrists and one on the side of my neck. Painful,

moderately, but debilitating? Not yet. This was Thursday last week. Friday they

grew bigger, and more. Saturday it was a bit painful to walk on, and by Sunday

morning I had a swollen ankle. I had read this is common with EN. I was getting

around by holding onto the walls in the house, propping myself down and not

moving at all other than the bathroom and to bed. Luckily, my fiance has been

doing everything. By Sunday night the other ankle had swollen bigger than the

first. I had, what looked like, a camel's hump on my shin that I supposed was a

bout 4 of those nodules crammed together. It was HUGE. I noticed the clumping in

a few areas on my body. My legs looked like (and grossly felt like) someone

shoved many sized pebbles and dirt into a big sock. The ankle has taken on a new

identity at this point. For the last 3 days I have not been able to walk on

either ankle. The nodules are still lingering around, but I am 100% effected by

the ankles, which I have none of at this point. My ankles are the size of my

thigh. In my worst, I was scooting on my butt to the bathroom, until my wrists

started swelling. We finally got a wheelchair for me yesterday.

> I have been to several places. They know its EN, but they have " gasp, never

seen anything like this before. " I have had numerous medical staff come into my

room to check out my ankles and legs. I feel like a freak show.

> After all of this, I am wondering if anyone else has had this ankle

experience. I can tolerate a lot of pain, but this feels like broken ankles that

I am forced to walk on.

> At this point, I still do not know what caused it. I do have some clouding

in my lung, so we are ruling out a few things with xrays and now ct scans.

> I would also be curious to know if anyone has been diagnosed with Valley

Fever before.

> And, most importantly, has anyone had this BEFORE becoming pregnant for the

first time and had it come back during pregnancy. I am terrified that this will

surface during pregnancy, even though it was not due to pregnancy the first

time.

> Thank you so much for your time. I am so impressed with the wealth of

knowleged in this forum. The research is so scarce and it's so comforting to see

other people's experiences so I don't feel like such a side show freak!

>

December 10, 2010

Thank you for the reply.

Not too many people are familiar with good ole Valley Fever. I do have all of

the classic symptoms. I am waiting on the blood work which will answer a lot of

questions for me. I did not do a formal meningitis screening, other than moving

my head/neck around in the doctors office. They must have not suspected it?

I like your suggestion of the support hoes and the Braggs. I will try anything

natural before moving to chemicals. I have been elevating and icing on a

regular basis, also.

I will post when I hear back about the blood work.

Take care,

>

> > I would first like to add that I a detest modern medicine. I don't

> > take pain pills, I don't like antibiotics and will refrain as long

> > as possible to take them. I, instead, turn to healing foods and

> > herbs. I am 30, female, live in Central California, am a

> > Psychologist and also have psoriasis. Additionally, and the hardest

> > thing for me right now, I am a runner. I completed a half marathon

> > just 4 weeks ago.

> > I have taken maybe 4 aspirin in the last 2 days due to not being

> > able to handle the pain any longer. I have also been eating a VERY

> > rich diet of raw and anti inflammatory foods and a lot of natural

> > herbs.

> > My story:

> > Much like everyone else's beginning symptoms, lethargy, general

> > malaise, etc, I thought I was just coming down with the flu, until

> > the night sweats started for many nights in a row. I also had

> > developed a very, very stiff neck around this time and thought it

> > was still just a flu bug. I woke about 2 weeks ago and had sharp

> > right chest pain. Not like a heart attach, but more like pneumonia.

> > So, off to Urgent Care I went. I was prescribed an antibiotic for

> > pleuricy (he did not do any xrays or tests). The antibiotic was

> > Cefdinir (generic for Omnicef). I took it 2x day for 4 days and went

> > to my Dr. when I was still not feeling good. The night sweats had

> > continued, I had a raging headache and started getting the infamous

> > little red bumps on my knee caps. After one look they said I

> > probably didn't have pneumonia, but Valley Fever. Valley Fever is a

> > central California spore that lodges into the lungs and can

> > disseminate and be lethal. Great. So, they prescribed me a " better "

> > antibiotic, which I did not take because antibiotics are not useful

> > for this fungal infection. The doctors pulled blood a week ago (when

> > the bumps started) and I should expect to find out in another week

> > if I have been exposed to Valley Fever.

> > Back to the EN, the topic of this group. The nodules grew and grew

> > and multiplied like rabbits, all over my upper thighs, knees and

> > shins. I found a few on my arms, elbows and wrists and one on the

> > side of my neck. Painful, moderately, but debilitating? Not yet.

> > This was Thursday last week. Friday they grew bigger, and more.

> > Saturday it was a bit painful to walk on, and by Sunday morning I

> > had a swollen ankle. I had read this is common with EN. I was

> > getting around by holding onto the walls in the house, propping

> > myself down and not moving at all other than the bathroom and to

> > bed. Luckily, my fiance has been doing everything. By Sunday night

> > the other ankle had swollen bigger than the first. I had, what

> > looked like, a camel's hump on my shin that I supposed was a bout 4

> > of those nodules crammed together. It was HUGE. I noticed the

> > clumping in a few areas on my body. My legs looked like (and grossly

> > felt like) someone shoved many sized pebbles and dirt into a big

> > sock. The ankle has taken on a new identity at this point. For the

> > last 3 days I have not been able to walk on either ankle. The

> > nodules are still lingering around, but I am 100% effected by the

> > ankles, which I have none of at this point. My ankles are the size

> > of my thigh. In my worst, I was scooting on my butt to the bathroom,

> > until my wrists started swelling. We finally got a wheelchair for me

> > yesterday.

> > I have been to several places. They know its EN, but they have

> > " gasp, never seen anything like this before. " I have had numerous

> > medical staff come into my room to check out my ankles and legs. I

> > feel like a freak show.

> > After all of this, I am wondering if anyone else has had this ankle

> > experience. I can tolerate a lot of pain, but this feels like broken

> > ankles that I am forced to walk on.

> > At this point, I still do not know what caused it. I do have some

> > clouding in my lung, so we are ruling out a few things with xrays

> > and now ct scans.

> > I would also be curious to know if anyone has been diagnosed with

> > Valley Fever before.

> > And, most importantly, has anyone had this BEFORE becoming pregnant

> > for the first time and had it come back during pregnancy. I am

> > terrified that this will surface during pregnancy, even though it

> > was not due to pregnancy the first time.

> > Thank you so much for your time. I am so impressed with the wealth

> > of knowleged in this forum. The research is so scarce and it's so

> > comforting to see other people's experiences so I don't feel like

> > such a side show freak!

> >

>

December 10, 2010

Hi Chantelle,

I am not sure if I have Valley Fever, but seems to all be pointing in that

direction.

Valley Fever has many symptoms, one of which is the EN. All of the lumps and

joint swelling is from the EN I think. I am trying to figure all of this out.

I may have a bit of a worse case than usual with the swelling, seems like.

Have you been tested for Valley Fever if you have EN? Seems pretty common to

have that around here.

> >

> >> I would first like to add that I a detest modern medicine. I don't take

pain

> >> pills, I don't like antibiotics and will refrain as long as possible to

take

> >> them. I, instead, turn to healing foods and herbs. I am 30, female, live in

> >> Central California, am a Psychologist and also have psoriasis.

Additionally,

> >> and the hardest thing for me right now, I am a runner. I completed a half

> >> marathon just 4 weeks ago.

> >> I have taken maybe 4 aspirin in the last 2 days due to not being able to

> >> handle the pain any longer. I have also been eating a VERY rich diet of raw

> >> and anti inflammatory foods and a lot of natural herbs.

> >> My story:

> >> Much like everyone else's beginning symptoms, lethargy, general malaise,

etc,

> >> I thought I was just coming down with the flu, until the night sweats

started

> >> for many nights in a row. I also had developed a very, very stiff neck

around

> >> this time and thought it was still just a flu bug. I woke about 2 weeks ago

> >> and had sharp right chest pain. Not like a heart attach, but more like

> >> pneumonia. So, off to Urgent Care I went. I was prescribed an antibiotic

for

> >> pleuricy (he did not do any xrays or tests). The antibiotic was Cefdinir

> >> (generic for Omnicef). I took it 2x day for 4 days and went to my Dr. when

I

> >> was still not feeling good. The night sweats had continued, I had a raging

> >> headache and started getting the infamous little red bumps on my knee caps.

> >> After one look they said I probably didn't have pneumonia, but Valley

Fever.

> >> Valley Fever is a central California spore that lodges into the lungs and

can

> >> disseminate and be lethal. Great. So, they prescribed me a " better "

> >> antibiotic, which I did not take because antibiotics are not useful for

this

> >> fungal infection. The doctors pulled blood a week ago (when the bumps

> >> started) and I should expect to find out in another week if I have been

> >> exposed to Valley Fever.

> >> Back to the EN, the topic of this group. The nodules grew and grew and

> >> multiplied like rabbits, all over my upper thighs, knees and shins. I found

a

> >> few on my arms, elbows and wrists and one on the side of my neck. Painful,

> >> moderately, but debilitating? Not yet. This was Thursday last week. Friday

> >> they grew bigger, and more. Saturday it was a bit painful to walk on, and

by

> >> Sunday morning I had a swollen ankle. I had read this is common with EN. I

> >> was getting around by holding onto the walls in the house, propping myself

> >> down and not moving at all other than the bathroom and to bed. Luckily, my

> >> fiance has been doing everything. By Sunday night the other ankle had

swollen

> >> bigger than the first. I had, what looked like, a camel's hump on my shin

> >> that I supposed was a bout 4 of those nodules crammed together. It was

HUGE.

> >> I noticed the clumping in a few areas on my body. My legs looked like (and

> >> grossly felt like) someone shoved many sized pebbles and dirt into a big

> >> sock. The ankle has taken on a new identity at this point. For the last 3

> >> days I have not been able to walk on either ankle. The nodules are still

> >> lingering around, but I am 100% effected by the ankles, which I have none

of

> >> at this point. My ankles are the size of my thigh. In my worst, I was

> >> scooting on my butt to the bathroom, until my wrists started swelling. We

> >> finally got a wheelchair for me yesterday.

> >> I have been to several places. They know its EN, but they have " gasp, never

> >> seen anything like this before. " I have had numerous medical staff come

into

> >> my room to check out my ankles and legs. I feel like a freak show.

> >> After all of this, I am wondering if anyone else has had this ankle

> >> experience. I can tolerate a lot of pain, but this feels like broken ankles

> >> that I am forced to walk on.

> >> At this point, I still do not know what caused it. I do have some clouding

in

> >> my lung, so we are ruling out a few things with xrays and now ct scans.

> >> I would also be curious to know if anyone has been diagnosed with Valley

> >> Fever before.

> >> And, most importantly, has anyone had this BEFORE becoming pregnant for the

> >> first time and had it come back during pregnancy. I am terrified that this

> >> will surface during pregnancy, even though it was not due to pregnancy the

> >> first time.

> >> Thank you so much for your time. I am so impressed with the wealth of

> >> knowleged in this forum. The research is so scarce and it's so comforting

to

> >> see other people's experiences so I don't feel like such a side show freak!

> >>

> >

>

December 10, 2010

Hi ,

My 'pneumonia always comes after EN flares. I have had lung biopsies and the results always come back with 'non specific' inflammation or a panniculitis in the lungs - exactly the same as the results for the biopsies in my legs. Obviously before the EN shows, there are changes happening in my body, as for me, EN is only a symptom, not a disease in itself. With the prednisone, there have been times in the past where I have been lucky enough to only need 12 days of treatment, starting with 50mg and wean down over the 12 days. Mostly I have to have a much higher dose, 100mg over a longer period and then wean over many, many months.

Curiously, though, this time, I have had very sore eyes, my eyelids are extremely painful to touch and they swell up during the nights. I didn't put it together until yesterday that perhaps I have some sort of allergy? Which may triggered the EN and the inflammation in the lungs?? I will be watching this and noting it in case it is relevant to my condition, and if I get any worse will go back to the doctor in the coming days.

Last night, I went to a Christmas function, ten pin bowling etc, and my left hip gave out and I have developed an incredibly sore throat, just like I have the flu. I am struggling to walk today. My hips also have been problematic in the past when EN is at its worst and the ankles are swollen. As much as I was in denial that I could overcome this myself this time, last night proved to me that it is much worse than I wanted to believe. I am increasing the steroids now to quote my doctor 'to get it under control'. The pain is horrendous this morning. I do hope I start to feel better soon, this is such a downer.

As for missing Queensland, you would love the tropical weather right now, very little change between night and day temperatures, hovering around 30 degrees C, with very high humidity, 88% as I type this at 7am, it is going to be another very hot and sticky day

I will keep you posted, and am happy to share any info you may have or need.

Regards

Trudi

New EN diagnosis 1 week ago with "rare" EN locations and MASSIVE ankle swelling> > > > I would first like to add that I a detest modern medicine. I don't take pain pills, I don't like antibiotics and will refrain as long as possible to take them. I, instead, turn to healing foods and herbs. I am 30, female, live in Central California, am a Psychologist and also have psoriasis. Additionally, and the hardest thing for me right now, I am a runner. I completed a half marathon just 4 weeks ago. > I have taken maybe 4 aspirin in the last 2 days due to not being able to handle the pain any longer. I have also been eating a VERY rich diet of raw and anti inflammatory foods and a lot of natural herbs. > My story: > Much like everyone else's beginning symptoms, lethargy, general malaise, etc, I thought I was just coming down with the flu, until the night sweats started for many nights in a row. I also had developed a very, very stiff neck around this time and thought it was still just a flu bug. I woke about 2 weeks ago and had sharp right chest pain. Not like a heart attach, but more like pneumonia. So, off to Urgent Care I went. I was prescribed an antibiotic for pleuricy (he did not do any xrays or tests). The antibiotic was Cefdinir (generic for Omnicef). I took it 2x day for 4 days and went to my Dr. when I was still not feeling good. The night sweats had continued, I had a raging headache and started getting the infamous little red bumps on my knee caps. After one look they said I probably didn't have pneumonia, but Valley Fever. Valley Fever is a central California spore that lodges into the lungs and can disseminate and be lethal. Great. So, they prescribed me a "better" antibiotic, which I did not take because antibiotics are not useful for this fungal infection. The doctors pulled blood a week ago (when the bumps started) and I should expect to find out in another week if I have been exposed to Valley Fever. > Back to the EN, the topic of this group. The nodules grew and grew and multiplied like rabbits, all over my upper thighs, knees and shins. I found a few on my arms, elbows and wrists and one on the side of my neck. Painful, moderately, but debilitating? Not yet. This was Thursday last week. Friday they grew bigger, and more. Saturday it was a bit painful to walk on, and by Sunday morning I had a swollen ankle. I had read this is common with EN. I was getting around by holding onto the walls in the house, propping myself down and not moving at all other than the bathroom and to bed. Luckily, my fiance has been doing everything. By Sunday night the other ankle had swollen bigger than the first. I had, what looked like, a camel's hump on my shin that I supposed was a bout 4 of those nodules crammed together. It was HUGE. I noticed the clumping in a few areas on my body. My legs looked like (and grossly felt like) someone shoved many sized pebbles and dirt into a big sock. The ankle has taken on a new identity at this point. For the last 3 days I have not been able to walk on either ankle. The nodules are still lingering around, but I am 100% effected by the ankles, which I have none of at this point. My ankles are the size of my thigh. In my worst, I was scooting on my butt to the bathroom, until my wrists started swelling. We finally got a wheelchair for me yesterday. > I have been to several places. They know its EN, but they have "gasp, never seen anything like this before." I have had numerous medical staff come into my room to check out my ankles and legs. I feel like a freak show. > After all of this, I am wondering if anyone else has had this ankle experience. I can tolerate a lot of pain, but this feels like broken ankles that I am forced to walk on. > At this point, I still do not know what caused it. I do have some clouding in my lung, so we are ruling out a few things with xrays and now ct scans. > I would also be curious to know if anyone has been diagnosed with Valley Fever before. > And, most importantly, has anyone had this BEFORE becoming pregnant for the first time and had it come back during pregnancy. I am terrified that this will surface during pregnancy, even though it was not due to pregnancy the first time. > Thank you so much for your time. I am so impressed with the wealth of knowleged in this forum. The research is so scarce and it's so comforting to see other people's experiences so I don't feel like such a side show freak!> >

December 10, 2010

Hi Everyone,

Whenever I hear a member mention lungs or breathing problems with EN I wonder if

they have been checked for Sarcoidosis or Lungren's Syndrome. I also think of

Alpha-1 ATT Deficiency which can affect the lungs as well as the liver. Alpha-`1

is genetic but you may not have symptoms until you are an adult--and you can

carry it without any symptoms and pass it on to your kids. I would run these

disorders by your doctor. A pulmonary specialist should be familiar with them.

Up date on me: Have been to the gym a few times and still no flare up of the EN

that has been in remission for over 2 yrs after having had chronic idiopathic EN

for over 40 yrs. The remission coinsided with menopause, so maybe I was having a

reaction to my own hormones--as wacky as that sounds.

Wising Everyone a Happy and Pain free Weekend!

Love,

> >

> > Oh ,

> > What you have described is like a mirror image of my worst outbreak five

years ago, including the massive and excruciating ankle pain and swelling. I

also have clouding on my lungs (often termed fibrosis, inflammation, granulomas

etc) and even though the doctors know I have an auto immune problem, they have

never diagnosed exactly what it is. In the last month my EN and swollen ankles

have returned and just this last 24 hours I have developed the burning and pain

in my chest, along with a nasty deep cough, much like when I get pneumonia. I

get pneumonia when the EN is out of control. The only drug that has ever helped

me is prednisone in large doses, and that is after 12 years of trialing

everything. I do hope you find an answer, I am often tested for Ross River

Fever, which sounds like your Valley fever, always negative. I cant offer much

help as it seems you and I are in the same predicament.

> >

> > Regards

> > Trudi (in Aus)

> > New EN diagnosis 1 week ago with " rare "

EN locations and MASSIVE ankle swelling

> >

> > I would first like to add that I a detest modern medicine. I don't take

pain pills, I don't like antibiotics and will refrain as long as possible to

take them. I, instead, turn to healing foods and herbs. I am 30, female, live in