RE: new to group

[Guest guest]

Welcome Shay

I am so sorry to hear about your losses. You have certainly come to the

right group that will provide you with abdominal cerclage information. The

procedure is a c-section procedure which can be done pre or post pregnancy. I

chose

the pre-pregancy and it went very smooth. I was home 2 days after the

surgery and walking around at home that week. I did choose to stay home for an

extra week since my cycle started and that is where I felt a bit more discomfort

than before. If you choose, you may start to ttc by the 3rd month after the

surgery. This procedure has excellent results as you might have already read.

Most of the women in this group have normal pregnacies and work throughout the

pregnancy depending on the job. Other that go the post-preg way need some

extra recovery time since the baby is already in the womb and could put pressure

on the cervix. Recovery either way is not bad. Welcome and God Bless!

Rosie(Tx)

2 early preg.

Angel Cesar 06/01/02

Angel Mia 03/27/03

Ab Cerclage placed 07/20/03

will ttc soon

[Guest guest]

Welcome and Caeden, Sorry you have to join us on this

rollercoaster, but glad you found us. This is a great group to

belong to. We are all very supportive, will listen to you rant and

rave, will share in your joy, and cry with you when needed. If you

have any questions, comments, or concerns, just post and someone

will respond.

Geri-Anne and Wyatt, Complex I

-- In Mito , " jjfrost4 " wrote:

> Hello all my son is 31 months old and has been dx with

mitochondrial

> myopothy but exact type is still unkown. He didn't start having

> problems till he was around 1. He was born prematurly and has

> Cerebral Palsy. At 1 he started regressing at a rapid pace

> motorically. He doesn't sit walk or barely roll. He is cognitivly

> great. Lately he appears to be getting weaker and sleeps more

> frequently. We recently had the micky button put in and he is now

> finally getting a quanity amount of food. He barely eats by mouth

> anymore as his strength seems diminished. He often has pneumonia.

He

> is on 15 different meds including the mito cocktail. He was just

put

> on valium for comfort. The thing that is the hardest is not

knowing

> the outcome of this disease. From what I have read and heard if

they

> are dx before 4 it's not good a outcome. I hope that I can gain

> knowledge and support from all of you as lately I feel very down

and

> am not sure what the future holds. The doc is going to start doing

> some DNA study's on him as soon as insurance approves it. His

biopsy

> tested neg for complex 1-4 but doc said he still thinks Leighs

sounds

> like him. He was positive on the pathology part of the biopsy. We

> have done lots of reading and I understand the disease pretty

good,

> and unfortunatly seem to be finding more and more ppl affected in

my

> area mostly children. Caeden's organs effected so far are the

brain

> (white matter damage is significant), muscles, heart(ck level

little

> high), breathing problems (shallow breathing, cyonotic episodes),

> failure to thrive, short stature, dev. delayed so on and so on. I

> hope I can be of support to all of you as well as u to me. Thanks

for

> listening.

> (mom to Caeden)

[Guest guest]

Welcome and Caeden, Sorry you have to join us on this

rollercoaster, but glad you found us. This is a great group to

belong to. We are all very supportive, will listen to you rant and

rave, will share in your joy, and cry with you when needed. If you

have any questions, comments, or concerns, just post and someone

will respond.

Geri-Anne and Wyatt, Complex I

-- In Mito , " jjfrost4 " wrote:

> Hello all my son is 31 months old and has been dx with

mitochondrial

> myopothy but exact type is still unkown. He didn't start having

> problems till he was around 1. He was born prematurly and has

> Cerebral Palsy. At 1 he started regressing at a rapid pace

> motorically. He doesn't sit walk or barely roll. He is cognitivly

> great. Lately he appears to be getting weaker and sleeps more

> frequently. We recently had the micky button put in and he is now

> finally getting a quanity amount of food. He barely eats by mouth

> anymore as his strength seems diminished. He often has pneumonia.

He

> is on 15 different meds including the mito cocktail. He was just

put

> on valium for comfort. The thing that is the hardest is not

knowing

> the outcome of this disease. From what I have read and heard if

they

> are dx before 4 it's not good a outcome. I hope that I can gain

> knowledge and support from all of you as lately I feel very down

and

> am not sure what the future holds. The doc is going to start doing

> some DNA study's on him as soon as insurance approves it. His

biopsy

> tested neg for complex 1-4 but doc said he still thinks Leighs

sounds

> like him. He was positive on the pathology part of the biopsy. We

> have done lots of reading and I understand the disease pretty

good,

> and unfortunatly seem to be finding more and more ppl affected in

my

> area mostly children. Caeden's organs effected so far are the

brain

> (white matter damage is significant), muscles, heart(ck level

little

> high), breathing problems (shallow breathing, cyonotic episodes),

> failure to thrive, short stature, dev. delayed so on and so on. I

> hope I can be of support to all of you as well as u to me. Thanks

for

> listening.

> (mom to Caeden)

[Guest guest]

Welcome and Caeden, Sorry you have to join us on this

rollercoaster, but glad you found us. This is a great group to

belong to. We are all very supportive, will listen to you rant and

rave, will share in your joy, and cry with you when needed. If you

have any questions, comments, or concerns, just post and someone

will respond.

Geri-Anne and Wyatt, Complex I

-- In Mito , " jjfrost4 " wrote:

> Hello all my son is 31 months old and has been dx with

mitochondrial

> myopothy but exact type is still unkown. He didn't start having

> problems till he was around 1. He was born prematurly and has

> Cerebral Palsy. At 1 he started regressing at a rapid pace

> motorically. He doesn't sit walk or barely roll. He is cognitivly

> great. Lately he appears to be getting weaker and sleeps more

> frequently. We recently had the micky button put in and he is now

> finally getting a quanity amount of food. He barely eats by mouth

> anymore as his strength seems diminished. He often has pneumonia.

He

> is on 15 different meds including the mito cocktail. He was just

put

> on valium for comfort. The thing that is the hardest is not

knowing

> the outcome of this disease. From what I have read and heard if

they

> are dx before 4 it's not good a outcome. I hope that I can gain

> knowledge and support from all of you as lately I feel very down

and

> am not sure what the future holds. The doc is going to start doing

> some DNA study's on him as soon as insurance approves it. His

biopsy

> tested neg for complex 1-4 but doc said he still thinks Leighs

sounds

> like him. He was positive on the pathology part of the biopsy. We

> have done lots of reading and I understand the disease pretty

good,

> and unfortunatly seem to be finding more and more ppl affected in

my

> area mostly children. Caeden's organs effected so far are the

brain

> (white matter damage is significant), muscles, heart(ck level

little

> high), breathing problems (shallow breathing, cyonotic episodes),

> failure to thrive, short stature, dev. delayed so on and so on. I

> hope I can be of support to all of you as well as u to me. Thanks

for

> listening.

> (mom to Caeden)

[Guest guest]

In a message dated 5/4/2004 2:12:41 PM Pacific Standard Time,

marinewife112003@... writes:

> I am really looking forward

> to emailing with all of you and hope to make some new friends.

> Thanks again for the invite to join. Take care

>

>

Hi , sorry you had such a bad time. I know the stress of having someone

you love in harm's way. My youngest son was an ammunitions expert durong

dessert storm. I aged 25 years. He sure grew to depend on the power of prayer

during that time! Hugs, Marilyn

[Guest guest]

> My name is , and I am 28. I have been diabetic for just over

> seven years and I struggle with it a lot.

Are you T1 or T2?

& T1

[Guest guest]

I am type 1.

--

We're gonna win Twins, we're

gonna score. We're gonna win

Twins, watch that baseball soar!

Knock out a homerun, shout a hip

horray! Cheer for the

Minnesota Twins today!

--The Minnesota Twins: Back to

back Western Division Champs!

[Guest guest]

> not sure what i have...and no one can figure it out

>

> arenot@...> wrote:> My name is , and I am 28.

Now come on - do we need to send you to good endocrinologist? That's a

hard one to say... either you produce insulin or you kinda do...

I think that's right???

. & T1 => does not produce insulin - well maybe a trickle.

[Guest guest]

Joyce, you sound like me. Was diagnosed about four years ago, but have not

taken it seriously until recently. Meds were keeping it under control so I

didn't worry. Lots of little things started happening and I've read so much

lately that I thought I better take hold of this thing now.

[Guest guest]

Hi, Joyce, what are your readings like? are they in range for what type of

Diabetes you have? are you T-1 or T-2? getting control and keeping it can be

frustrating and aggravating...lol...there are patient assistance programs

that your doctor can hook you up with to help with the cost of the

medications, and he/she can also help with samples... I know, mine helps

keep me in actos and in Mavik, the heart med I have to take...

Welcome to the group

Carmen

[Guest guest]

>

> Hi:

> I am very excited to have found a group that I hopefully can exchange

> information with who can relate. I feel like I have been on my own

> lonely island for years working on this.

> I have a son, age 12 who has had gastrointestinal problems all his

> life. His has been given a diagnosis of eosinphilic gastroentertis and

> prescribed numerous medications that have had no positive effects. He

> also has severe anxiety and has been diagnosed with OCD with aspects of

> Asbergers. He was unsuccessful at managing school, so I homeschooled

> him for 1 1/2 years before finding a special school that to date is

> working well. I have had him on a gluten free diet for years that has

> helped but not completely. I stumbled on SCD and it looks like it

> could be an answer. I pray!!

> Anyone who has children similiar to my son, it would be great to hear

> of your successes.

>

Welcome ,

Many parents have success stories to share and some symptoms may correspond to

what

your son has experienced. It sounds like a trial of SCD could be of some

benefit.

Carol F.

SCD 5 years, celiac

[Guest guest]

>

> Hi:

> I am very excited to have found a group that I hopefully can exchange

> information with who can relate. I feel like I have been on my own

> lonely island for years working on this.

> I have a son, age 12 who has had gastrointestinal problems all his

> life. His has been given a diagnosis of eosinphilic gastroentertis and

> prescribed numerous medications that have had no positive effects. He

> also has severe anxiety and has been diagnosed with OCD with aspects of

> Asbergers. He was unsuccessful at managing school, so I homeschooled

> him for 1 1/2 years before finding a special school that to date is

> working well. I have had him on a gluten free diet for years that has

> helped but not completely. I stumbled on SCD and it looks like it

> could be an answer. I pray!!

> Anyone who has children similiar to my son, it would be great to hear

> of your successes.

>

Welcome ,

Many parents have success stories to share and some symptoms may correspond to

what

your son has experienced. It sounds like a trial of SCD could be of some

benefit.

Carol F.

SCD 5 years, celiac

[Guest guest]

> I started the south beach diet three days ago. I skipped over phase

> 1. I used to do Atkins and found that when I reintroduced carbs my

> progress slowed so much that I practically had to stay on Phase 1.

> South Beach is much healthier. I am doing Vegetarian South Beach

> this time and I am skipping phase 1. I have lost 7 lbs in three

> days on the diet. I see no need for anyone to go through phase 1.

Phase 1 has a purpose and should not be skipped unless there's a pretty good

reason for it. If you're doing the diet vegetarian, you'll be running close

to P1; enough so that it wouldn't take much more to just eliminate corn,

peas and fruit for 2 weeks. As it is, you're not really following P2

either. If you don't follow the plan, you'll be hard pressed to get any

real help from anyone here. I'll be you have lost 7lbs in three days if

you're eating like this every day; you're starving yourself.

> Breakfast: sm. apple

> cup of apple/spice tea

Wow. That is just NOWHERE near enough for breakfast. Do you find yourself

coming away from this satisfied?

There's no snack here between breakfast and lunch either. Just don't like

eating in the morning or...?

> Lunch: boco spicy chicken patty topped with grilled

> onions,portabella muchroom with a slice of tomato, a dollop of lgt.

> sour cream and some salsa.

> Side of mixed frozen veggies.

> cup of mint tea

The boca spicy chik'n patties are not SBD friendly. They have added sugar,

corn starch, and corn.

> Snack: sm. apple

Ok as a snack, however, depending on the size of these " small " apples,

you're exceeding the typical starting point for P2 on fruits but since

you're not following the plan exactly anyway, I'm not sure how this will

impact you.

> Dinner: 2 slices high fiber low calorie wheat bread toasted. Filled

> with raw spinach leaves, tom.,cucumber, grilled jalapenos with some

> lgt. may.

> Side of mixed frozen veggies saute'd with olive oil spray and lemon

> pepper sesoning.

Watch the light mayo -- many have added sugar.

[Guest guest]

The main reason I skipped over phase 1 is because when I did atkins

with is practically the same as phase 1 my hair started falling

out. This happened both times I started Atkins. I didn't want that

to happen with South Beach.

As for Breakfast before starting this I didn't eat any breakfast.

This is a big start for me.

As for Boca spicy chicken I agree with that. I have switched today

to SB approved Grilled Boca Burgers.

How many fruits a day are you allowed? I limit myself to two and by

small I mean small. The cantaloup is 1/2 a cup and the apple is the

smallest I can find.

I do think I am sticking to SB pretty good. As for dinner being

light Im not so sure it is that light. There have been plenty of

times I have had salad and baked potato for dinner. But it was

loaded with the wrong kinds of fats. As for the mayo I do limit to

1 TBS. and the A1 sauce on my privious post was only a teaspoon for

flavor.

I don't snack much. I do get hungry around 3:00pm that is why I

have the fruit for a snack.

I don't like using artificial sugar in anything. I have found that

Splenda and sucralose effect my memory pretty badly. So don't have

the desserts that many others do. That is why I have the extra

peice of fruit a day. I have to tweak the diet alittle for my own

well being.

Keep in mind these are just two days of menu's. I do change around

and mix things up. I don't eat this every day.

Thank you for your advice.

>

> > I started the south beach diet three days ago. I skipped over

phase

> > 1. I used to do Atkins and found that when I reintroduced carbs

my

> > progress slowed so much that I practically had to stay on Phase

1.

> > South Beach is much healthier. I am doing Vegetarian South Beach

> > this time and I am skipping phase 1. I have lost 7 lbs in three

> > days on the diet. I see no need for anyone to go through phase 1.

>

> Phase 1 has a purpose and should not be skipped unless there's a

pretty good

> reason for it. If you're doing the diet vegetarian, you'll be

running close

> to P1; enough so that it wouldn't take much more to just eliminate

corn,

> peas and fruit for 2 weeks. As it is, you're not really following

P2

> either. If you don't follow the plan, you'll be hard pressed to

get any

> real help from anyone here. I'll be you have lost 7lbs in three

days if

> you're eating like this every day; you're starving yourself.

>

> > Breakfast: sm. apple

> > cup of apple/spice tea

>

> Wow. That is just NOWHERE near enough for breakfast. Do you find

yourself

> coming away from this satisfied?

>

> There's no snack here between breakfast and lunch either. Just

don't like

> eating in the morning or...?

>

> > Lunch: boco spicy chicken patty topped with grilled

> > onions,portabella muchroom with a slice of tomato, a dollop of

lgt.

> > sour cream and some salsa.

> > Side of mixed frozen veggies.

> > cup of mint tea

>

> The boca spicy chik'n patties are not SBD friendly. They have

added sugar,

> corn starch, and corn.

>

> > Snack: sm. apple

>

> Ok as a snack, however, depending on the size of these " small "

apples,

> you're exceeding the typical starting point for P2 on fruits but

since

> you're not following the plan exactly anyway, I'm not sure how

this will

> impact you.

>

> > Dinner: 2 slices high fiber low calorie wheat bread toasted.

Filled

> > with raw spinach leaves, tom.,cucumber, grilled jalapenos with

some

> > lgt. may.

> > Side of mixed frozen veggies saute'd with olive oil spray and

lemon

> > pepper sesoning.

>

> Watch the light mayo -- many have added sugar.

>

>

>

[Guest guest]

> The main reason I skipped over phase 1 is because when I did atkins

> with is practically the same as phase 1 my hair started falling

> out. This happened both times I started Atkins. I didn't want that

> to happen with South Beach.

The South Beach Diet is not the Atkins diet. If you follow it as described

in the book, with the updates listed here, you'll see the differences. The

SBD emphasizes " good carbs " and " good fats " . The only things you eliminate

from your diet during P1 are things that are either unhealthy in the first

place or that will interfere in the process of stabilizing your blood

glucose levels. Done right, I can't imagine that causing your hair to fall

out IF you follow it properly.

A well balanced vegetarian diet is typically a low GI and low fat diet

assuming you watch for added sugar. Of course, the word " vegetarian " is

somewhat open for argument. There are lacto-vegetarians (those that avoid

meat but eat dairy), ovo-vegetarians (avoid meat but still eat eggs), and of

course strict/total vegetarians (sometimes erroneously called vegans) who

avoid all animal products period. Some people consider themselves

vegetarian simply because they give up red meat but still eat poultry

(pollo-vegetarians) while others consider themselves vegetarian even though

they eat fish (pesco-vegetarians). Then there are combinations of those --

such as the popular lacto-ovo vegetarian.

> As for Breakfast before starting this I didn't eat any breakfast.

> This is a big start for me.

You need to eat at least 3 meals a day. They do not have to be big or even

breakfast foods -- I tend to eat the previous evening's leftovers, myself.

Had a bowl of soup for breakfast this morning. But a small apple and a cup

of tea is nowhere NEAR enough nutrients. The SBD also calls for a serving

of vegetables in your breakfast meal and that's absent from your posted

menus.

A typical P1 breakfast consists of the following:

*****************************************************************

BREAKFAST

~~~~~~~~~

Protein: Quantity is not limited. Start with a 2 oz. portion,

eat slowly, go back for seconds if still hungry.

Vegetables: Minimum 1/2 cup or 6-8 oz. tomato or vegetable juice.

Milk/Dairy: 2 cups allowed daily (including yogurt)

Fat: 1 tsp mayonnaise, trans-free margarine, or oil

(optional)

*****************************************************************

For P2, it's basically the same however you have the option of adding 1

fruit and/or 1 starch to your day's meals. In other words, you can have 1

serving of either over the course of the day, eating it at whatever meal you

prefer.

Having a decent meal to start the day is important as it sets the groundwork

for the rest of your day's eating. Again, you don't have to eat a

" traditional breakfast " but just eating a small apple isn't enough; in fact,

it's generally recommended that you avoid eating fruit for breakfast when

you first start P2.

> As for Boca spicy chicken I agree with that. I have switched today

> to SB approved Grilled Boca Burgers.

Be very cautious about foods that have the SB seal of approval on them.

Agatston sold out to Kraft big time -- the SBD approved line from Kraft is

generally NOT SBD friendly. I did not know there were Boca Burgers with the

SBD seal on them but in the past their products have not been allowed on the

diet so I'd be leary of them now. Besides, these things are something else

-- there's more ingredients in a Boca Burger than in most meals I prepare,

it's unreal. If you're looking for a vegetarian patty, look for Dr

Praeger's Bombay veggie burgers. They're kosher parve, heart healthy,

cholesterol free, no trans fatty acids, vega and as they like to boast " you

recognize all the ingredients " . For example, here's what's on the Bombay

veggie burgers:

Carrots, peas, onions, oat bran, fresh soy beans, string beans, zucchini,

corn, spinach, broccoli, red pepper, arrowroot, fresh garlic, curry, corn

meal, salt, soy flake, garam maslala, parsley, black pepper, cumin, &

expeller pressed canola oil.

Now, technically, the corn ingredients are not SBD friendly so you'll have

to decide if you want to buck the system on this one or not. On the other

hand, there's nothing unexpected in there and they taste darn good (I'm

hooked here).

> How many fruits a day are you allowed? I limit myself to two and by

> small I mean small. The cantaloup is 1/2 a cup and the apple is the

> smallest I can find.

If you run the plan, you do P1 without fruit then when you move to P2 you

add fruit back in slowly at the rate of 1 serving per day, typically NOT at

breakfast. By starting out at 2, you're not only skipping P1 but jumping in

at about the 1-2 month marker for P2. Not necessarily a good idea, and it

will typically slow down your progression through the diet but eventually

you'll catch up.

What constitutes a serving is listed in the foods to enjoy/avoid list

(updated version on the group's web site):

FRUIT (Start with one daily serving, gradually increase to 3 total servings

daily)

Apples - 1 small or 5 dried rings

Apricots - 4 fresh or 7 dried

Banana, medium-sized (4 oz.)

Berries, all - 3/4 cup

Cactus Pear Fruit (Prickly Pear)

Cantaloupe - 1/4, or 1 cup diced

Cherries - 12

Grapefruit - 1/2

Grapes - 15

Kiwi - 1

Mangoes - 1/2 medium (4 oz.)

Oranges - 1 medium

Papaya - 1 small (4 oz.)

Peaches - 1 medium

Pears - 1 medium

Plantain

Plums - 2

Prunes - 4

> I do think I am sticking to SB pretty good. As for dinner being

> light Im not so sure it is that light. There have been plenty of

> times I have had salad and baked potato for dinner. But it was

> loaded with the wrong kinds of fats.

Pretty much all of your meals are light. Granted, I'm a big eater, but my

toddlers are eating more in a meal than you describe in most of your meals.

Eating very little at meals is a common dieting tactic. Thing is, the SBD

is not a " diet " in the modern sense of the word -- it's a way of eating, a

lifestyle change. Maybe you're just a small eater and if so, then that's

fine. I'd have to wonder how you became overweight if this represents the

portions you normally eat and if it does not, then I would wonder how you're

walking away from the table feeling even close to full. If you are then

hey, all the more power to ya, but you're definitely not the norm!

> As for the mayo I do limit to

> 1 TBS. and the A1 sauce on my privious post was only a teaspoon for

> flavor.

There are lots of things I'd like to add to meals for flavor but they're not

allowed on the diet so I avoid them. On the mayo, it's not so much how

much you limit as it is the kind you're eating. When I eat mayo, I use the

full fat version. Why? Because the light/fat-free versions have

ingredients that I do not want. Let's face it -- the whole idea behind

using mayo is to add the flavors associated with the fat. It's perfectly

permissible to do this on the SBD just so long as you restrict it to within

the daily guidelines for added fat intake. If you like the flavor of the

low-fat varieties, that's ok -- just watch out for those added sugars.

What a lot of folks don't think about when they go on a diet of any kind, is

how the food industry lures our taste buds in. There are basically three

taste ingredients in food -- salty, sugary, fatty. That's what you'll find

the food industry uses. If they reduce one, they tend to increase one or

both of the others. Reduce two, and they REALLY jack up the others. Too

much of any one of these ingredients is a bad thing regardless of what's

marketed through the front label. Mayo is just one example.

> I don't snack much. I do get hungry around 3:00pm that is why I

> have the fruit for a snack.

Initially, you're supposed to have a nutritional snack just to help keep

your blood glucose levels stable. That's all a part of P1. In P2 you can

skip the snacks but it is encouraged that you keep them, at least for a

while.

> I don't like using artificial sugar in anything. I have found that

> Splenda and sucralose effect my memory pretty badly. So don't have

> the desserts that many others do. That is why I have the extra

> peice of fruit a day.

I will not use artificial sweeteners either. They're bad news and I want

nothing to do with them. I also do not do dessert. Ever. Having the extra

fruit has nothing to do with the sweeteners unless, of course, you're having

cravings for something sweet. In that case, then you really need to run

through P1.

> I have to tweak the diet alittle for my own well being.

> Keep in mind these are just two days of menu's. I do change around

> and mix things up. I don't eat this every day.

It's one thing to tweak it a little; it's another to not really follow the

plan. It's up to you how you want to do this but note the title of the

group --> " South Beach Diet - Getting It Right " . If you want advice on how

to do the SBD, then this is the place to go and we'll help you -- LOTS. But

if you want to do it your own way, then you're not going to find this group

of much help.

[Guest guest]

Hi, welcome to the family. This disease is a tough one, but you've found a place to learn and grow in your knowledge of how to cope iwth sarcoidosis.

We're just short of 400 members--a far cry from the 1st year with a few dozen.

As far as your sarcoidosis-- I too have spinal sarcoidosis, and the muscles spasms are hell. What I've found to work is a combination of things-- I'm on Methotrexate, Plaquenil and Remicade. Since we've added the Remicade, my bone and joint, muscle pain has decreased tremendously.

I'm also on Motrin 800mg 3x day, and Flexeril, Effexor XR and Neurontin.

What I've found most helpful in stopping the muscles spasms is to make sure that I get enough fluids down-- several of the posts just today, address this issue. I imagine that you've spent years on high dose prednisone, and that leaches the calcium from your bones-- and puts it in all the wrong places (kidneys, liver, gallbladder, bone spurs, granulomas)-- so that there is a store of it. However, the result is bone pain.

I can't do pain meds-- (was addicted) so I do everything from guided meditation/relaxation exercises, to MSM Powder, and when the pain gets to severe, I will take Calcium/Magnesium supplements. This seems to help alot. I don't do high dose of any of them-- but enough to put my body back into sync.

Check out our ARCHIVES and LINKS-- we have posts and articles and sites that you can copy and take to the MD with you. The address for these locations is at the bottom section of this and every email.

Again, welcome to the gang,

Tracie

NS Co-owner/moderator

[Guest guest]

Hi, welcome to the family. This disease is a tough one, but you've found a place to learn and grow in your knowledge of how to cope iwth sarcoidosis.

We're just short of 400 members--a far cry from the 1st year with a few dozen.

As far as your sarcoidosis-- I too have spinal sarcoidosis, and the muscles spasms are hell. What I've found to work is a combination of things-- I'm on Methotrexate, Plaquenil and Remicade. Since we've added the Remicade, my bone and joint, muscle pain has decreased tremendously.

I'm also on Motrin 800mg 3x day, and Flexeril, Effexor XR and Neurontin.

What I've found most helpful in stopping the muscles spasms is to make sure that I get enough fluids down-- several of the posts just today, address this issue. I imagine that you've spent years on high dose prednisone, and that leaches the calcium from your bones-- and puts it in all the wrong places (kidneys, liver, gallbladder, bone spurs, granulomas)-- so that there is a store of it. However, the result is bone pain.

I can't do pain meds-- (was addicted) so I do everything from guided meditation/relaxation exercises, to MSM Powder, and when the pain gets to severe, I will take Calcium/Magnesium supplements. This seems to help alot. I don't do high dose of any of them-- but enough to put my body back into sync.

Check out our ARCHIVES and LINKS-- we have posts and articles and sites that you can copy and take to the MD with you. The address for these locations is at the bottom section of this and every email.

Again, welcome to the gang,

Tracie

NS Co-owner/moderator

[Guest guest]

Hi, welcome to the family. This disease is a tough one, but you've found a place to learn and grow in your knowledge of how to cope iwth sarcoidosis.

We're just short of 400 members--a far cry from the 1st year with a few dozen.

As far as your sarcoidosis-- I too have spinal sarcoidosis, and the muscles spasms are hell. What I've found to work is a combination of things-- I'm on Methotrexate, Plaquenil and Remicade. Since we've added the Remicade, my bone and joint, muscle pain has decreased tremendously.

I'm also on Motrin 800mg 3x day, and Flexeril, Effexor XR and Neurontin.

What I've found most helpful in stopping the muscles spasms is to make sure that I get enough fluids down-- several of the posts just today, address this issue. I imagine that you've spent years on high dose prednisone, and that leaches the calcium from your bones-- and puts it in all the wrong places (kidneys, liver, gallbladder, bone spurs, granulomas)-- so that there is a store of it. However, the result is bone pain.

I can't do pain meds-- (was addicted) so I do everything from guided meditation/relaxation exercises, to MSM Powder, and when the pain gets to severe, I will take Calcium/Magnesium supplements. This seems to help alot. I don't do high dose of any of them-- but enough to put my body back into sync.

Check out our ARCHIVES and LINKS-- we have posts and articles and sites that you can copy and take to the MD with you. The address for these locations is at the bottom section of this and every email.

Again, welcome to the gang,

Tracie

NS Co-owner/moderator

[Guest guest]

Tracie,

Thanks for mentioning the addiction; too many people don't realized their pain meds can cause addiction or pseudoaddiction. You are just so anxious to get rid of the pain and keep it away you don't realize that you can't live without them. I come from a family of addicts (prescription meds, street drugs, alcohol) and worry about that all the time. I will actually sometimes put up with the pain (mostly my legs from spasms and joint pain) rather than take something for it. I don't want to end up like my family.

When I worked in pain management (before I got sick) we always tried to get patients to take a "holiday" from pain meds. Don't do this without your doctor's permission. This must not be taken lightly but this is one way we helped our patients. It was only for a weekend and it wasn't every pain medication they were on but it was helpful to the patients to resensitize them.

Thanks as always for helping us Tracie. We really appreciate you.

Terri G.>> Hi, welcome to the family. This disease is a tough one, but you've found a > place to learn and grow in your knowledge of how to cope iwth sarcoidosis.> > We're just short of 400 members--a far cry from the 1st year with a few > dozen. > > As far as your sarcoidosis-- I too have spinal sarcoidosis, and the muscles > spasms are hell. What I've found to work is a combination of things-- I'm on > Methotrexate, Plaquenil and Remicade. Since we've added the Remicade, my bone > and joint, muscle pain has decreased tremendously. > > I'm also on Motrin 800mg 3x day, and Flexeril, Effexor XR and Neurontin. > > What I've found most helpful in stopping the muscles spasms is to make sure > that I get enough fluids down-- several of the posts just today, address this > issue. I imagine that you've spent years on high dose prednisone, and that > leaches the calcium from your bones-- and puts it in all the wrong places > (kidneys, liver, gallbladder, bone spurs, granulomas)-- so that there is a store of > it. However, the result is bone pain.> > I can't do pain meds-- (was addicted) so I do everything from guided > meditation/relaxation exercises, to MSM Powder, and when the pain gets to severe, I > will take Calcium/Magnesium supplements. This seems to help alot. I don't do > high dose of any of them-- but enough to put my body back into sync. > > Check out our ARCHIVES and LINKS-- we have posts and articles and sites that > you can copy and take to the MD with you. The address for these locations is > at the bottom section of this and every email. > > Again, welcome to the gang,> Tracie> NS Co-owner/moderator>

[Guest guest]

Tracie,

Thanks for mentioning the addiction; too many people don't realized their pain meds can cause addiction or pseudoaddiction. You are just so anxious to get rid of the pain and keep it away you don't realize that you can't live without them. I come from a family of addicts (prescription meds, street drugs, alcohol) and worry about that all the time. I will actually sometimes put up with the pain (mostly my legs from spasms and joint pain) rather than take something for it. I don't want to end up like my family.

When I worked in pain management (before I got sick) we always tried to get patients to take a "holiday" from pain meds. Don't do this without your doctor's permission. This must not be taken lightly but this is one way we helped our patients. It was only for a weekend and it wasn't every pain medication they were on but it was helpful to the patients to resensitize them.

Thanks as always for helping us Tracie. We really appreciate you.

Terri G.>> Hi, welcome to the family. This disease is a tough one, but you've found a > place to learn and grow in your knowledge of how to cope iwth sarcoidosis.> > We're just short of 400 members--a far cry from the 1st year with a few > dozen. > > As far as your sarcoidosis-- I too have spinal sarcoidosis, and the muscles > spasms are hell. What I've found to work is a combination of things-- I'm on > Methotrexate, Plaquenil and Remicade. Since we've added the Remicade, my bone > and joint, muscle pain has decreased tremendously. > > I'm also on Motrin 800mg 3x day, and Flexeril, Effexor XR and Neurontin. > > What I've found most helpful in stopping the muscles spasms is to make sure > that I get enough fluids down-- several of the posts just today, address this > issue. I imagine that you've spent years on high dose prednisone, and that > leaches the calcium from your bones-- and puts it in all the wrong places > (kidneys, liver, gallbladder, bone spurs, granulomas)-- so that there is a store of > it. However, the result is bone pain.> > I can't do pain meds-- (was addicted) so I do everything from guided > meditation/relaxation exercises, to MSM Powder, and when the pain gets to severe, I > will take Calcium/Magnesium supplements. This seems to help alot. I don't do > high dose of any of them-- but enough to put my body back into sync. > > Check out our ARCHIVES and LINKS-- we have posts and articles and sites that > you can copy and take to the MD with you. The address for these locations is > at the bottom section of this and every email. > > Again, welcome to the gang,> Tracie> NS Co-owner/moderator>

[Guest guest]

Tracie,

Thanks for mentioning the addiction; too many people don't realized their pain meds can cause addiction or pseudoaddiction. You are just so anxious to get rid of the pain and keep it away you don't realize that you can't live without them. I come from a family of addicts (prescription meds, street drugs, alcohol) and worry about that all the time. I will actually sometimes put up with the pain (mostly my legs from spasms and joint pain) rather than take something for it. I don't want to end up like my family.

When I worked in pain management (before I got sick) we always tried to get patients to take a "holiday" from pain meds. Don't do this without your doctor's permission. This must not be taken lightly but this is one way we helped our patients. It was only for a weekend and it wasn't every pain medication they were on but it was helpful to the patients to resensitize them.

Thanks as always for helping us Tracie. We really appreciate you.

Terri G.>> Hi, welcome to the family. This disease is a tough one, but you've found a > place to learn and grow in your knowledge of how to cope iwth sarcoidosis.> > We're just short of 400 members--a far cry from the 1st year with a few > dozen. > > As far as your sarcoidosis-- I too have spinal sarcoidosis, and the muscles > spasms are hell. What I've found to work is a combination of things-- I'm on > Methotrexate, Plaquenil and Remicade. Since we've added the Remicade, my bone > and joint, muscle pain has decreased tremendously. > > I'm also on Motrin 800mg 3x day, and Flexeril, Effexor XR and Neurontin. > > What I've found most helpful in stopping the muscles spasms is to make sure > that I get enough fluids down-- several of the posts just today, address this > issue. I imagine that you've spent years on high dose prednisone, and that > leaches the calcium from your bones-- and puts it in all the wrong places > (kidneys, liver, gallbladder, bone spurs, granulomas)-- so that there is a store of > it. However, the result is bone pain.> > I can't do pain meds-- (was addicted) so I do everything from guided > meditation/relaxation exercises, to MSM Powder, and when the pain gets to severe, I > will take Calcium/Magnesium supplements. This seems to help alot. I don't do > high dose of any of them-- but enough to put my body back into sync. > > Check out our ARCHIVES and LINKS-- we have posts and articles and sites that > you can copy and take to the MD with you. The address for these locations is > at the bottom section of this and every email. > > Again, welcome to the gang,> Tracie> NS Co-owner/moderator>