Question

[Guest guest]

,

Yes foot deformities do go along with tc. In my case my toes are curled and my

foot is very arched. Although it is better since my recent surgery to detether.

I have read other stories on this list of different kinds of foot problems. I

also have a lump on the top of my foot with a extra dry patch of skin right over

it like a calluse. I think because it rubs on my shoe more because of the extra

arching in that foot. Are you having any other symptoms? I hope this helps and

it never hurts to investigate it further. Chris

question

Hello,

Sorry I havent posted in a while, been busy trying to find a job and

looking into volunteering at a hospital within the next couple

days. But I have a questions again...I have been looking at TC

websites and saw that a sign of TC is foot deformities? Is that

true. For the past few years I have had a bump that appears to be

the bone of the outside of my foot sticking out of my foot. Could

that be a sign of the TC? I am going to my ortho on Friday because

I may need surgery to have it fixed because the last procedure to

help it did not work(the just shaved off excess skin from my foot :

( ) If anyone has had a problem similar to this can you help me?

Any thing would be appreciated. Thanks... M.

[Guest guest]

Hello,

My toes are slightly curled. I also have my ankles fused so that

could be causing my foot to grow incorectly. But I guess I will

find out at the Dr. on Friday. Thanks for everyones input.

M.

> Hi , the first sign of my TC was bad foot deformities,

mostly my

> left foot and then as I grew, my R foot got worse. The Left is

still

> the worst.

>

> However, it depends what your feet look like - do you have raised

> arches, curled toes, walking tiptoe, floppy feet, poor ankles

control?

> it may be worth getting your feet looked at in the context of TC

before

> you go for any unnecessary surgery.

>

> Regards

>

> Nina

>

>

> Quoting i_didnt_do_it16 <i_didnt_do_it85@h...>:

>

> > Hello,

> > Sorry I havent posted in a while, been busy trying to find a job

and

> >

> > looking into volunteering at a hospital within the next couple

> > days. But I have a questions again...I have been looking at TC

> > websites and saw that a sign of TC is foot deformities? Is that

> > true. For the past few years I have had a bump that appears to

be

> > the bone of the outside of my foot sticking out of my foot.

Could

> > that be a sign of the TC? I am going to my ortho on Friday

because

> > I may need surgery to have it fixed because the last procedure

to

> > help it did not work(the just shaved off excess skin from my

foot :

> > ( ) If anyone has had a problem similar to this can you help

me?

> > Any thing would be appreciated. Thanks... M.

> >

> >

> >

[Guest guest]

Yes, this is true. However, just because you have a Foot Deformity doesn't

mean it is related to Tethered Cord. So it needs to be checked out more to

find out if it is related. Some of the problems that can be related are:

Drop Foot, High Arches, or Arches that are raising, Curled Toes.

I don't know for sure if your specific Foot Problem would be related to

Tethered Cord or not. But, there is always a chance that it could be

related. So don't rule out both possiblities

Hope this helps.

Me

Nebraska, USA

mymocha@...

But I have a questions again...I have been looking at TC

> websites and saw that a sign of TC is foot deformities? Is that

> true. For the past few years I have had a bump that appears to be

> the bone of the outside of my foot sticking out of my foot. Could

> that be a sign of the TC?

[Guest guest]

I think they can be 3 seperate Birth Defects. However, 2 of them, from what

I know, Club Foot and Spina Bifida are often seen together. But they are

also seen seperately. Like I have Spina Bifida, but not Club Foot.

I have also heard that if you have Foot/Toe Deformities that are related to

Tethered Cord, that it is best to Release the Cord first, I suposse for the

reasons that it may alone help the Foot/Toe Deformities. And that if you had

the Foot/Toe Surgery(ies) first, you would also have a good chance of having

a Detethering later, which as you can see, would lead to more Surgery. But I

could be wrong.

Just some Notes from Brande.

Me

Nebraska, USA

mymocha@...

> When my son Evan was born with Down Syndrome, spina bifida and a

> severe right club foot I thought he had 3 separate birth defects.

> BUT according to the neurosurgeon the club foot goes along with spina

> bifida/tethered cord.

>

and they finally realized that

> as long as the cord is tethered you can't " fix " the foot. So they

> untether the cord and then work on the foot.

[Guest guest]

I think they can be 3 seperate Birth Defects. However, 2 of them, from what

I know, Club Foot and Spina Bifida are often seen together. But they are

also seen seperately. Like I have Spina Bifida, but not Club Foot.

I have also heard that if you have Foot/Toe Deformities that are related to

Tethered Cord, that it is best to Release the Cord first, I suposse for the

reasons that it may alone help the Foot/Toe Deformities. And that if you had

the Foot/Toe Surgery(ies) first, you would also have a good chance of having

a Detethering later, which as you can see, would lead to more Surgery. But I

could be wrong.

Just some Notes from Brande.

Me

Nebraska, USA

mymocha@...

> When my son Evan was born with Down Syndrome, spina bifida and a

> severe right club foot I thought he had 3 separate birth defects.

> BUT according to the neurosurgeon the club foot goes along with spina

> bifida/tethered cord.

>

and they finally realized that

> as long as the cord is tethered you can't " fix " the foot. So they

> untether the cord and then work on the foot.

[Guest guest]

Dixie,

I thought I was the only one who has that kid of connection to my

Victor... He is a one year (and 4 day) old pug... He snuggles and

kisses when I feel awful, and he is a rambunctious bundle of energy

when I am okay. He is an excellent listener... And even when I don't

feel very pretty, I remind myself that my dog is often referred to

as " so ugly he is cute " so when I feel bad about myself I must

be " so ugly I am cute " too! Plus, I will never have as many wrinkles

as he does!

He really makes me do things even if I don't want to and helps keep

me from throwing a pitty party for myself. Every morning I know I

have to get out of bed to walk him... I know he needs his play time,

even if it is me lying in bed an dhim chasing the laser pointer...

He keeps me active and keeps my mind off my pain, well, some of the

time...

Bekkah

[Guest guest]

Kaylene,

How old is your puppy... Victo is a year + 4 days and he is just

starting to catch on... Good luck, have patience, and always keep a

ball, stuffed toy or something for him to chase when he has more

energy than you do!

Bekkah

[Guest guest]

Kaylene

Any Chance I could borrow Cuddles or send Victor to you... He is

like 90% house trained, but sometimes he will just some in from a

walk and make a mess... I think it is simply to spite me... His

favorite spot to mess, in the shower... At least it is easier to

clean!

Bekkah

[Guest guest]

hi.. yes when i run low and cannot get my pain meds i take lower pain meds till

i can get my meds.. 3 months ago ,my doc got sick so i had to see another one

he changed my pain meds from, demoral to moraphine boy 5 days no shit... excuse

that,,, i had shivers. sweats puking, canno t eat from getting changed when my

doc came back he went and rimmed out the doc that changed me.. i never knew that

i could of got reaaly sick from withdrawls and ended up in hosp.. or worse..

this is what my doc said,,,, so now i try to make everything last... i moderate

my pain meds day to day,, depending on hw much pain im in. i hav a bone chip in

rite hip that just knocks me down for it moves then im in bed.... my back

also,,,,, brenda

[Guest guest]

Hi Kathy,

When I moved, my Duragesic patch scrip had to be mailed, it couldn't be called

in. I had chills so bad I called my daughter and told her I had the flu. She

brought me her electric blanket. I didn't realize it was withdrawal......

Joan

[Guest guest]

Kathy,

I was on Oxycontin and it made me too sick to eat. I decided that I

needed to lower the dose and ramped down slowly to avoid withdrawl.

apparently it wasn't slow enough. Runny nose, sweating buckets,

chills, muscle tremors, diarrhea, nausea, feeling edgey... It was

bad for about 2 days but I got through it. I don't think I had it

very bad compared to many others.

I guess you just have to wait and hope it gets better, it will after

a few days. If you start having severe symptoms call your doctor or

go to the ER, it can be dangerous if it gets too bad. But it doesn't

sound like yours is that bad so far.

Good Luck,

Dave in Silicon Valley

Kathy wrote: do you struggle with any withdrawal symptoms when that

happens?

[Guest guest]

IV steriods may be better " regulated " , but the effects would likely be about the

same. And of course, the nasty side effects would be just as bad. You should

be taking suppliments, such as calcium when on steriods. My suggestion is to

see a nutricianist, I know they are expensive, but prednosnone has extremely

nasty side effects especially for bones and joints when used long term. If your

current steriod treatment is not working the next step should probably be to

look for another alternative. You are putting steriods in your body with

getting no benefit. Steroids are steroids, really makes little difference how

it enters the body. My 2 cents after much experience with this stuff.

jeff,

cd,

pg,

imed

>

> Has anyone here used monthly iv steroid infusions? Since oral steroids and

plaquenil are not doing enough to keep EN at bay, my doctor is talking about

using this treatment. They are sending me to an infectious disease doctor for

his opinion on this as well. I just wonder about the side effects as compared

to oral treatment.

>

> Thanks!

>

[Guest guest]

Hi!

It is very likely I have MCTD in addition to the Still's - and there is a lot

of UCTD in my family. What UCTD is, is that you have symptoms of 3 or more

autoimmune diseases, but not enough to be diagnosed with a specific one.  MTCD

is where you have several different complete diagnosis of autoimmune diseases.

The symptoms of each vary as widely as the person.

 ~Keilia~

www.mdjunction.com

" Being deeply loved by someone gives you strength, while loving someone deeply

gives you courage. " - Lao Tzu

________________________________

To: Stillsdisease

Sent: Tue, January 5, 2010 4:14:53 PM

Subject: Question

 

Hi Everyone,

I was wondering if any of you could give me a better understanding of

unspecified diffuse connective tissue disease and what that really means....?

Thanks in advance for any information. ....

Beth

[Guest guest]

My wife certainly finds it a bit of a strain.

At first when she became aware of my reaction, she thought there must be

something wrong with her, that she was a horrible eater making sounds she didn't

notice herself. After a while, when I explained that I had also reacted this way

to my father eating, she decided that is was " my problem, not hers " . She doesn't

go out of her way to annoy me - in fact, she tries to wait until I have gone

away before eating or drinking. But she needs to eat and drink, so it is my

problem to cope with that at mealtimes and morning and afternoon tea breaks.

When the kids were younger and noisier, we all sat at the dinner table and it

was OK for me. But now, as they are older and less boisterous (we are a family

of introverts), I cannot sit at the dinner table as I can hear my wife eating. I

generally sit in front of the TV on the lounge/sofa in the same room. Also,

_everyone_ closes the bathroom door when they are brushing their teeth. It just

seems to be an unwritten rule in our household.

My younger daughter with 4S either blocks her ears or leaves the room when

people trigger her. If I make myself lunch in the kitchen, where she can see and

hear me from her computer desk, she leaves the room.

I guess you could say that my wife puts up with my 4S (and our younger

daughter's) but she sees herself more as suffering from our 4S rather than

sympathising with it: the four of us suffer from the 4S that two of us have.

Basically, I spend a lot of time in my study or sometimes wearing earphones. I

still get triggered daily at home ... and of course in many other places,

although it is mostly a momentary distress rather than sustained torture. I have

my own office at work, and it is generally very quiet - a bit like a library

sometimes.

If you haven't read Dr 's article on 4S, you should read it and take it

to your psychologist:

http://audiology.advanceweb.com/Article/Selective-Sound-Sensitivity-Syndrome.asp\

x

It suggests that 4S is inherited. Many people here have reported that other

family members, including aunts, nieces or nephews, etc have 4S. The pattern

looks suspiciously like an inherited condition. One of my daughters has it and

the other seems to be completely unaffected by it - as though one got the gene

and one didn't.

I have _never_ mentioned 4S to any health professional - I only discovered that

other people had 4S last August, and I have had it for 40 years. I have never

been to an audiologist or a psychologist or psychiatrist, although I was

depressed enough in my teen years to need one. I take medication for blood

pressure, and that includes a beta blocker which _may_ reduce my reactions to

4S, as this article shows:

http://en.wikipedia.org/wiki/Beta_blocker#Anxiety_and_performance_enhancement

I would not regard myself as having as severe 4S as some people here. It hasn't

prevented me from getting married, taking up the career of my choice, or gaining

a senior position. It is more a daily aggravation than a major disability for

me, in that sense. But I can readily understand how other people suffer major

life problems as a result of 4S: it would be sheer torture to live or work in

the conditions that some here find themselves in.

>

> Ian,

> Wow what you describe sounds a lot like what i'm going through now. It does

seem like my fiancee is the trigger person. It seems like everything he does

annoys me. How does your wife cope with it? Even when he clears his throat. Just

the sound of it is just irritating. Especially when he's in the kitchen just

putting dishes away or doing anything in the kitchen, annoys the heck out of me.

Are you on any meds at all? I just feel like my anxiety level goes up when he

does this. My psychologist even doesn't understand it.

> I don't want to eat in a different room as him because we all eat as a family

usually. That's just the way we do things. So do you think your daughter learned

it from you about the noises? Or is it heretitary?

>

[Guest guest]

Ian,

Thank you so much for the information. ;-) It's really helped. I will take that

article to my psychologist. The last time I was there, she said she's never

heard of something like what I have, and even said it sounds like an audiology

thing. I thought it was more of a mental thing. I don't remember my parents

being like this. My sister actually has a similar problem. My mom and dad annoy

her a lot like when they talk. Even if she's in her room, she can hear them

through the floor and tells them to be quiet. It sounds kind of funny but I

understand how annoying it can be. My fiancee eats chips a lot and that really

annoys me. And just the way he sounds when he chews is loud. It's like you can

hear the saliva and his jaw and everything making noise in there. Also, when he

swallows drinks.....he makes a loud gulping sound. He knows it's my problem, not

his and he sometimes goes out of his way to not make those noises. I think i

have to just leave the room when he's doing them. When we're eating at the table

though...it doesn't bother me because i'm eating also. I think my eating blocks

out his eating sounds or something. But if we're just sitting on the couch and

he brings out a bag of chips, that's when it really annoys me.

> >

> > Ian,

> > Wow what you describe sounds a lot like what i'm going through now. It does

seem like my fiancee is the trigger person. It seems like everything he does

annoys me. How does your wife cope with it? Even when he clears his throat. Just

the sound of it is just irritating. Especially when he's in the kitchen just

putting dishes away or doing anything in the kitchen, annoys the heck out of me.

Are you on any meds at all? I just feel like my anxiety level goes up when he

does this. My psychologist even doesn't understand it.

> > I don't want to eat in a different room as him because we all eat as a

family usually. That's just the way we do things. So do you think your daughter

learned it from you about the noises? Or is it heretitary?

> >

>

[Guest guest]

Just curious how long you have been on the beta blocker? I'm wondering if there is any chance that it might have prevented your 4s from getting as bad as others here. I know they use betablockers sometimes for people right after a traumatic experience because it can keep them from developng PTSD. I used it a few times for some phobic reactions I was having, but didn't really notice it helping the 4s. I take medication for blood pressure, and

that includes a beta blocker which _may_ reduce my reactions to 4S, as this article shows:

http://en.wikipedia.org/wiki/Beta_blocker#Anxiety_and_performance_enhancement

I would not regard myself as having as severe 4S as some people here.

[Guest guest]

Most of mine are on shins and calves, but also heels, ankles and knees.

I also have some on my forearms and hands, but they arent anything like so troublesome. The worst ones for discomfort seem to be on the ankles and knees because of the way they prevent full joint movement. However the largest ones by area are on my calves and are really only a major discomfort when lying flat on my back in bed. The ones on my arms and hands are a lot smaller and only a nuisance when they are where I want to rest my arm on a table or armrest - most of the time I dont notice them.

This is my first outbreak, started early April this year. The most painful time was about a month after, i.e. for the month of May, and although I still have lots of EN lumps and new ones coming up, they are nothing like as painful as they were then and I no longer get the major oedema that swelled up my feet so much I could only wear strap sandals.

I dont know why any doc would say "you cannot get EN in such and such a location", since the authoritative medical sites (such as our National health service one) says they can be anywhere, even though lower legs is the most usual.

I dont think high oestrogen can be the case for me as I have always had low oestrogen and am now past the menopause, so it is presumably lower still and I am not on HRT. Apart from soya, what else is high in natural oestrogen in our diets? I thought that was pretty much it?

Regards Nina Baker

Failing to plan = Planning to fail

Subject: QuestionTo: erythema_nodosum_Group Date: Monday, 14 June, 2010, 17:45

Hi there,I have a short question. Did anyone here ever have an EN at the calf? I heard this is unusual and so far I also never had it there in the past but now I do have it at my left calf. So I´m a little confused and worry if I´m wrong and it is something else. But well, I´m pretty sure it is EN.

Thanks for reading this here.

Take care,

[Guest guest]

Hi ,

I have had it on both of my legs, behind the knees, elbows, forearms. For me, the elbows were the worse, the only place they hurt by doing nothing. The forearms while on the computer or in car. They say you can get them just about everywhere. Mine seem to of followed either my blood supply on back on knees, tendons or something. Never got an official dx on where they were following. But the blood tests showed neg. for whatever they checked for. But the bio did show EN.

Debbie

EN 5-7

PS I have not seen your name in years. Grew up with a girl named , in SF, Ca

To: erythema_nodosum_Group Sent: Mon, June 14, 2010 9:45:20 AMSubject: Question

Hi there,I have a short question. Did anyone here ever have an EN at the calf? I heard this is unusual and so far I also never had it there in the past but now I do have it at my left calf. So I´m a little confused and worry if I´m wrong and it is something else. But well, I´m pretty sure it is EN.

Thanks for reading this here.

Take care,

[Guest guest]

Hi a,I always got a sore throat prior to an outbreak. A little fever, too and extremely tired.Best,ML GemmillSent via BlackBerry from T-MobileDate: Mon, 14 Jun 2010 20:29:15 -0400To: <erythema_nodosum_Group >Subject: Question Hi,I posted about my daughter who just turned 17 and has EN about 8 months now.Have any of you ever checked for auto immune diseases ? Those of youthat had biopsies done what did the doctor say ? just EN ??My daughter had a biopsy done about 3 weeks ago and they said it wascutaneous poly rheumatoid nodosa. The specialist she saw after saidshe just thought this was a skin disorder ( panniculitis ) and gaveher medication. She thinks she would out grow this. I am now waitingon a second opinion from the biopsy.The dermatologist said if you do not find out exactly what caused theEN you would not be able to treat the underlying cause.This is all new to me and I am so confusedddddddddd...... Mydaughter's legs seem to look a little better but she sometimes hasflare ups.Any of you get a sore throat ? dry mouth ? or any others symptoms ?She sometimes get pain in her ankle (( only one )) and some times itgets swollen.Please reply.Thanksa...

[Guest guest]

a,

I had a bio done on my knee, and it was EN but he also said something about TB, but when asked, he said it did not concern me. I was quite upset with him, and reported it. When I went to see if he still worked there, he was gone, no message as to why. He did not have much of a bedside manner.

I feel for your daughter, especially at that age, when it is hard enough being a teen girl, and then en?

I was very dry, sore throat I think due to having mouth open during all the snoozing I was doing, and still get very dry mouth now. Come to think of it, quite often lately, but figure that is due to extremely dry air.

I also have one very sore ankle, my right. Dr.s told me plantar fasciitis I am not so sure anymore after reading how many on here have trouble with the ankles, which feels swollen, but does not look to be swollen, more inside, if that makes any sense.

Take care and I am sure your daughter has a wonderful support system. She could really use it.

Debbie en 5-7

To: erythema_nodosum_Group Sent: Mon, June 14, 2010 5:29:15 PMSubject: Question

Hi,I posted about my daughter who just turned 17 and has EN about 8 months now.Have any of you ever checked for auto immune diseases ? Those of youthat had biopsies done what did the doctor say ? just EN ??My daughter had a biopsy done about 3 weeks ago and they said it wascutaneous poly rheumatoid nodosa. The specialist she saw after saidshe just thought this was a skin disorder ( panniculitis ) and gaveher medication. She thinks she would out grow this. I am now waitingon a second opinion from the biopsy.The dermatologist said if you do not find out exactly what caused theEN you would not be able to treat the underlying cause.This is all new to me and I am so confusedddddddddd...... Mydaughter's legs seem to look a little better but she sometimes hasflare ups.Any of you get a sore throat ? dry mouth ? or any others symptoms ?She sometimes get pain in her ankle ((

only one )) and some times itgets swollen.Please reply.Thanksa...

[Guest guest]

Now you mention it, I too had very dry mouth when the EN/Sarcoidosis was at its worst. No dry air here (west coast of scotland) ! I had put it down to the constant low grade fever but perhaps it is just another aspect of the inflammatory disease.

Regards Nina Baker

Failing to plan = Planning to fail

Subject: Re: QuestionTo: erythema_nodosum_Group Date: Tuesday, 15 June, 2010, 6:23

a,

I had a bio done on my knee, and it was EN but he also said something about TB, but when asked, he said it did not concern me. I was quite upset with him, and reported it. When I went to see if he still worked there, he was gone, no message as to why. He did not have much of a bedside manner.

I feel for your daughter, especially at that age, when it is hard enough being a teen girl, and then en?

I was very dry, sore throat I think due to having mouth open during all the snoozing I was doing, and still get very dry mouth now. Come to think of it, quite often lately, but figure that is due to extremely dry air.

I also have one very sore ankle, my right. Dr.s told me plantar fasciitis I am not so sure anymore after reading how many on here have trouble with the ankles, which feels swollen, but does not look to be swollen, more inside, if that makes any sense.

Take care and I am sure your daughter has a wonderful support system. She could really use it.

Debbie en 5-7

To: erythema_nodosum_Group Sent: Mon, June 14, 2010 5:29:15 PMSubject: Question

Hi,I posted about my daughter who just turned 17 and has EN about 8 months now.Have any of you ever checked for auto immune diseases ? Those of youthat had biopsies done what did the doctor say ? just EN ??My daughter had a biopsy done about 3 weeks ago and they said it wascutaneous poly rheumatoid nodosa. The specialist she saw after saidshe just thought this was a skin disorder ( panniculitis ) and gaveher medication. She thinks she would out grow this. I am now waitingon a second opinion from the biopsy.The dermatologist said if you do not find out exactly what caused theEN you would not be able to treat the underlying cause.This is all new to me and I am so confusedddddddddd...... Mydaughter's legs seem to look a little better but she sometimes hasflare ups.Any of you get a sore throat ? dry mouth ? or any others symptoms ?She sometimes get pain in her ankle ((

only one )) and some times itgets swollen.Please reply.Thanksa...

[Guest guest]

a,

I really feel for your daughter and for you. It is agonising for any parent watching your lovely child in distress, not least because EN can look so awful. On the other hand a lot of her age group are wearing long skirts again, so even in the summer perhaps not essential to show nasty support stockings or whatever.

My ankles are a problem, a bit worse today so am back to strappy sandals as the edges of most shoes rub the sore bits. Fortunately the weather is warm!

Regards Nina Baker

Failing to plan = Planning to fail

Subject: QuestionTo: erythema_nodosum_Group Date: Tuesday, 15 June, 2010, 1:29

Hi,I posted about my daughter who just turned 17 and has EN about 8 months now.Have any of you ever checked for auto immune diseases ? Those of youthat had biopsies done what did the doctor say ? just EN ??My daughter had a biopsy done about 3 weeks ago and they said it wascutaneous poly rheumatoid nodosa. The specialist she saw after saidshe just thought this was a skin disorder ( panniculitis ) and gaveher medication. She thinks she would out grow this. I am now waitingon a second opinion from the biopsy.The dermatologist said if you do not find out exactly what caused theEN you would not be able to treat the underlying cause.This is all new to me and I am so confusedddddddddd...... Mydaughter's legs seem to look a little better but she sometimes hasflare ups.Any of you get a sore throat ? dry mouth ? or any others symptoms ?She

sometimes get pain in her ankle (( only one )) and some times itgets swollen.Please reply.Thanksa...------------------------------------You can help Erythema Nodosum Research. Just go to http://www.goodsearch.com/ and under the I'm Supporting section enter Erythema Nodosum Research Fund. Every time you use Goodsearch to search, a penny will be donated to EN Research. NOW you can also GoodShop for Erythema Nodosum. All your favorites including Amazon.com will donate when you specify Erythema Nodosum as who you GoodShop for. So sign up today, and be sure to tell your friends, family and co-workers. Let's find a cure for Erythema Nodosum!

[Guest guest]

Can contact lenses or contact lense solution trigger EN?