intense foot pain

July 13, 2007

Don't your doctors tell you you shouldn't be putting those chemicals

on your skin?

Your feet are sending you a message all right, but you aren't

listening to them.

Its stop with the chemicals!

Skin is permeable to to polar molecules, many solvents, etc. and many

chemicals in lotions, etc. INCREASE the skin's permeability to them.

(this applies to mold toxins, which are small polar molecules, and

mold toxins have recently been shown in a number of recent studies to

be present in many homes at much higher levels than previously

thought)

Since you are Swedish, check out this article from Sweden that

discusses the mechanics of skin penetration issue somewhat:

A new water-based topical carrier with polar skin-lipids.

http://www.lipidworld.com/content/5/1/12

>

> Hi all, I know I've seen this here before, but never really applied to

> me so, didn't pay enough attention. For the past 3 weeks my feet have

> turned against me in an effort to take over my life. I can't think of

> anything I've done to deserve their traitorism. Do pedi's at home,

> lotion them everyday, paint their nails nice colors, etc. Greedy

> little, (well not sooo little)suckers are revolting against their

> owner. What can I do?? It seems like the whole length of them hurt

> rather badly, like all the long bones. No position makes them happy and

> it got sooo bad, I actually had to wear lovely flip flops to work. Boss

> was cool about it too. Any ideas?? Motrin and skelaxin do not help.

> Also, Im scheduled to go to see the ocular immunologist soon and have

> been reading my medical records from my docs. My neuro questioned

> whether this was neuro sarc because my ace level was only slightly

> elevated in my csf.My symptoms are chronic uveitis,fatigue, muscle and

> bone pain,numbness in the glove/stocking pattern,double vision and

> trouble with balance, sometimes. Any thoughts on how to not sound like

> a wacko walking in with this list and no clear cause?? This is where it

> gets extremely frustrating. Thanks, Bonnie B

> P.S. My computer was down for some time. Good to be back.

>

July 13, 2007

Bonnie,

I know what you are talking about foot pain. I have had this for years and I always put this cream on that has advil and herbs and it helps with the pain. It is awesome stuff and then I put on thick padded socks. But every shoe I wear hurts my feet and when I get out bed in the morning it is awful for the first step. It does get progressively worse for me when I wear flip flops or anything with no support.

If anyone has any ideas I am listening.

KatGet a sneak peak of the all-new AOL.com.

July 13, 2007

My neuro questioned whether this was neuro sarc because my ace level was only slightly elevated in my csf.My symptoms are chronic uveitis,fatigue, muscle and bone pain,numbness in the glove/stocking pattern,double vision and trouble with balance, sometimes. Any thoughts on how to not sound like a wacko walking in with this list and no clear cause?? This is where it gets extremely frustrating. Thanks, Bonnie B

Your neuro is questioning whether this is another of the systemic auto-immune diseases and since your ACE was only slightly high (hmm, steroids maybe?) or are you one of the lucky ones that doesn't get the inflammation markers but still gets the disease.

So did the spinal fluid show the bands for MS or is it positive for Lupus? Do you have diabetes or diabetes insipudus? What's the blood sugar levels-- A1C I believe?

You are not wacko, and you need to take your list of problems in to the neurophthalmologist and hopefully he'll have some better ideas. These docs need to look past the simple answers and figure out what is going on. Look at the articles on cranial nerves, and you will see that the balance, the double vision, the numbness, is all part of the inflammation of certain cranial nerves.

Tell him that you don't want him to think you're wacko- and that NS is what you feel is going on. Ask for his opinion, take some articles in- (ARCHIVES) and put your chair in front of the door. You're paying him to help you.

Sarcoidosis is no longer the RARE disease it was. It was that often miss-diagnosed, so it just seems rare. They know that all patients with pulmonary fibrosis have sarcoidosis. However, not all sarcoidosis patients have pulmonary fibrosis.

I hope the appt goes well,

Tracie'

NS Co-owner/moderatorGet a sneak peak of the all-new AOL.com.

July 13, 2007

Much of the nerve pain that we get in our feet is from the sarc granulomas that press on the nerves. If your blood sugar is high, then the extremities are one of the first areas hit by neuropathy.

Many of us also have small nerve fiber neuropathy, where the small nerves that are on the skin flare. Heat or cold effect each of us differently.

Another problem is that we develop the sarcoidosis induced arthritis and the hands and feet and ankles are one of the most often hit areas. So a lot of this pain is from that issue.

If putting on hand lotions helps the situation, then use it. I'd be leary of the ones that offer that hot/cold effect, or the chili powder remedies-- and then to put your feet into socks and shoes that don't breath. Ouch.

The palms of our hands and soles of our feet are the leaching ground for the drugs we're on-- and that adds a wonderful component of icky smells to our feet- so it's pretty clear what causes that issue. A natural preservative free, fragrance free lotion can be very soothing to those nerve fibers- so be wise about your choices.

Take care,

Tracie

NS Co-owner/moderatorGet a sneak peak of the all-new AOL.com.

July 14, 2007

Tracie,

Thanks for your reply. I actually was diagnosed with refular ol sarc and do have pulmonary scarring and fibrosis, bilateraly. My diagnosis was never biopsy confirmed because my "expert doctor" at the time didn't feel it was necessary. Since then, my pulmonary sarc has not been the big issue. My muscles and nerve pain started after I got off my first round of steroids and I have never gone back on them since. I guess my sarc is mild compared to most, but not to me. I'm the one who has to live with the symptoms. Compared to many people on this site, I am in fairly good shape or gtreat denial!! Either way, it works for me. I have alot of pain but, it's funny, you do get used to a bit of it. Bonnie BGet a sneak peak of the all-new AOL.com.

July 15, 2007

Bonnie, I don't if this was a typo, but I've been going nuts trying to figure out what it is!

refular ol sarc Hope you can clear this up for me. Thanks!

Ramblin' Rose

Moderator

From: quiltenbe@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: intense foot painDate: Sat, 14 Jul 2007 10:21:40 EDT

Tracie,

Thanks for your reply. I actually was diagnosed with refular ol sarc and do have pulmonary scarring and fibrosis, bilateraly. My diagnosis was never biopsy confirmed because my "expert doctor" at the time didn't feel it was necessary. Since then, my pulmonary sarc has not been the big issue. My muscles and nerve pain started after I got off my first round of steroids and I have never gone back on them since. I guess my sarc is mild compared to most, but not to me. I'm the one who has to live with the symptoms. Compared to many people on this site, I am in fairly good shape or gtreat denial!! Either way, it works for me. I have alot of pain but, it's funny, you do get used to a bit of it. Bonnie B

Get a sneak peak of the all-new AOL.com.

See what you’re getting into…before you go there

July 15, 2007

Kat, can you describe just what the pain is like, where it hurts, etc?

I have had pain in my feet for 4+ years from neuropathy. It's just the front half of my feet. It started as a mild burning to more intense burning. Then it started feeling like little knives sticking me, or walking on broken glass. This was when I was still working & by the end of the day I would be limping badly. My feet are very sensitive to touch & sometimes it's even hard to wash between my toes. If they are not warm, they hurt more,so I wear thick sox all the time, even with sandals in the summer, because of air conditioning. I can't go barefoot anymore; even in the house I wear slippers because every tiny bump in the carpet hurts my feet. Elevating my feet helps; at home I use an exercise ball that isn't fully inflated so is squooshy. It's more comfortable than a stack of pillows. I carry a folding camp stool with me most places, to put my feet on. Especially late in the day, my feet feel like they will explode, even though they are not swollen & the color is normal. Even the loose, XL men's sox I wear feel tight, and I can't stand to have a blanket touch my feet. On those occasions, I use a frame I made out of a lightweight metal shelf (just bent it like a C) & put the blankets on top of it.

I take Lyrica, which helps a lot. I originally took 150mg twice a day, but it made me too drowsy during the day, so I just take it at night. On bad nights I take an extra 75mg; I can't take 300 because it still leaves me knocked out the next day. Neurontin helped, but I had to stop it after spacing out & wrecking my car. I've also taken Cymbalta, which really helped the exploding sensation, but I needed a different antidepressant so had to stop the Cymbalta a few months ago. I've also used Capsaicin cream, which is made from hot peppers. It burns like crazy when you first put it on, but it really did help. I'm thinking of trying it again. Mostly I try to minimize the pain by keeping my feet warm & elevated, wearing shoes with thick soles & gel inserts, and avoiding stop & start driving. I even cut up a small nerf football & attached the pieces to my trike pedals. I rest my arches on the foam, so that there is no pressure on the balls of my feet.

I hope this information helps you, or someone else.

Ramblin' Rose

Moderator

From: katskreations1@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: intense foot painDate: Fri, 13 Jul 2007 20:58:34 EDT

Bonnie,

I know what you are talking about foot pain. I have had this for years and I always put this cream on that has advil and herbs and it helps with the pain. It is awesome stuff and then I put on thick padded socks. But every shoe I wear hurts my feet and when I get out bed in the morning it is awful for the first step. It does get progressively worse for me when I wear flip flops or anything with no support.

If anyone has any ideas I am listening.

Kat

Get a sneak peak of the all-new AOL.com.

See what you’re getting into…before you go there

July 19, 2007

To: Neurosarcoidosis Subject: Re: intense foot pain Sent: Wednesday, July 18, 2007 12:21 PM

PLEASE BE CAREFUL WITH THINGS LIKE ADVIL CREAM BECAUSE THEY CAN GIVE YOU AN OVERDOSE OF THESE NSAIDS WHICH CAN DAMAGE YOUR LIVER/KIDNEYS SERIOUSLY..See http://www.nlm.nih.gov/medlineplus/news/fullstory_50982.html

Bengay Death Highlights OTC DangersJust because it's nonprescription doesn't mean it's harmless, experts caution in wake of teen track star's overdose from sports cream

FRIDAY, June 15 (HealthDay News) -- The bizarre death of a New York City high school track star from a muscle pain cream overdose is raising a red flag once again on the hazards of overusing common over-the-counter medications, experts say.

The New York City medical examiner's office ruled last week that 17-year-old cross-country runner Arielle Newman died from an accidental overdose of methyl salicylate, the wintergreen-scented ingredient found in popular sports balms.

To help ease exercise-related discomfort, the Staten Island teenager reportedly had been putting Bengay on her legs between running meets, while also using adhesive pads with methyl salicylate, an aspirin-like anti-inflammatory, and a third product, according to the Associated Press.

"There were multiple products, used to great excess," Ellen Borakove, a spokeswoman for the NYC medical examiner's office, told the AP. All of the products can be found as nonprescription items on drug store shelves.

But over-the-counter almost never means "harmless," experts warned.

Methyl salicylate, or salicylic acid, is the active ingredient in creams such as Bengay, Icy Hot and Tiger Balm, as well as aspirin, and "is potentially harmful if it is overused," said Dr. Gerard Varlotta, the director of sport rehabilitation at Rusk Institute of Rehabilitation Medicine in New York City.

An anti-clotting agent, salicyclic acid at very high doses "can cause internal bleeding, it can cause arrhythmias of the heart, it can cause problems in the liver -- there are any number of ways it can get to you," Varlotta added.

However, long-familiar brands like Bengay (which first debuted in U.S. drug stores more than 100 years ago) don't set off alarm bells in most Americans' minds, so the temptation to overuse them is there, Varlotta said.

And while most people would definitely think twice about swallowing a fistful of aspirin or other OTC pills, people forget that creams carry dangers, too.

"Remember, there are a whole variety of [medicinal] products that are specifically formulated to be absorbed through the skin," Varlotta said.

As with any drug, moderation is key, another expert added.

"You have to follow the directions, because the poison is in the dose," advised Elena Juris, an education outreach specialist at the American Association of Poison Control Centers in Washington, D.C. And that maxim applies to creams just as much as it does to pills, she said.

Her groups' statistics for 2005 show that 14 Americans died from skin exposures to some kind of toxic substance, although a breakdown on exactly which substances caused those deaths has not yet been compiled, Juris said.

However, she noted that, "the seventh most common substances involved in human exposures from poisoning are, in fact, topical preparations. In 2005, poison control centers reported 109,831 exposures related to topical substances."

Newman's Bengay-linked death was an extremely rare occurrence, however, and & , which makes the cream, told AP that their product "is safe and effective when used as directed to provide relief from minor arthritis pain, sore, aching and strained muscles and backaches."

Similar to advice given for prescription drugs, it's crucial that consumers carefully read label instructions and warnings for all OTC products. Varlotta believes that the cautions could be better highlighted, however.

"If you look at all of these [OTC] products, you cannot tell anything from the outside of the box," he said. In the case of the Bengay that Newman used, "there's nothing in big letters that says that it contains aspirin," Varlotta said. "It's in the fine print."

Many consumers also fail to realize that the same drug can pop up in multiple, and very different, OTC products.

"Cough and cold preparations are a common mistake," Juris said. "You might be taking a cold preparation that includes acetaminophen, and you also take acetaminophen [pills] for headache. So, you are overdosing it right there. So, it's not just looking at the label for directions, it's also making sure that you are not combining products and increasing the recommended dosage."

Other OTC products on Varlotta's radar include the painkillers Advil or Motrin (two or three OTC pills equal the dose in one prescription-strength pill, he noted), a host of poorly regulated herbals and dietary supplements, and Voltaren, an anti-inflammatory muscle cream that many of his patients bring back with them from Europe.

Voltaren isn't approved for OTC sale in the United States, Varlotta said, but it can cause real problems for Americans who bring it home.

"People come back, and they are given a prescription by their doctor for another anti-inflammatory, so that means they're now using the cream plus the anti-inflammatory, and they end up getting gastrointestinal problems, bleeding," he said. "And then I tell them: 'Let me see the cream.' And sure enough, it's Voltaren or some other cream they've brought back."

The bottom line, according to the experts, is that every drug -- even a nonprescription cream -- comes with some level of risk.

"Just because it's OTC doesn't mean that it's entirely safe and that it can be used against the directions that are being set out by the makers," Varlotta said. "People should know what they are taking, both orally and on their skin."HealthDayCopyright © 2007 ScoutNews, LLC. All rights reserved.Related News:

More News on Drug Safety

More News on Over-the-Counter Medicines

More News on Pain Relievers Need a brain boost? Recharge with a stimulating game. Play now!

PLEASE BE CAREFUL WITH THINGS LIKE ADVIL CREAM BECAUSE THEY CAN GIVE YOU AN OVERDOSE OF THESE NSAIDS WHICH CAN DAMAGE YOUR LIVER/KIDNEYS SERIOUSLY..See

http://www.nlm.nih.gov/medlineplus/news/fullstory_50982.htmlBengay Death Highlights OTC Dangers

Just

because it's nonprescription doesn't mean it's harmless, experts

caution in wake of teen track star's overdose from sports creamFRIDAY, June 15 (HealthDay News) -- The

bizarre death of a New York City high school track star from a muscle

pain cream overdose is raising a red flag once again on the hazards of

overusing common over-the-counter medications, experts say.

The New York City medical examiner's office ruled last week that

17-year-old cross-country runner Arielle Newman died from an accidental

overdose of methyl salicylate, the wintergreen-scented ingredient found

in popular sports balms.

To help ease exercise-related discomfort, the Staten Island

teenager reportedly had been putting Bengay on her legs between running

meets, while also using adhesive pads with methyl salicylate, an

aspirin-like anti-inflammatory, and a third product, according to the Associated Press.

" There were multiple products, used to great excess, " Ellen

Borakove, a spokeswoman for the NYC medical examiner's office, told the

AP. All of the products can be found as nonprescription items on drug store shelves.

But over-the-counter almost never means " harmless, " experts warned.

Methyl salicylate, or salicylic acid, is the active ingredient in

creams such as Bengay, Icy Hot and Tiger Balm, as well as aspirin, and

" is potentially harmful if it is overused, " said Dr. Gerard Varlotta,

the director of sport rehabilitation at Rusk Institute of

Rehabilitation Medicine in New York City.

An anti-clotting agent, salicyclic acid at very high doses " can

cause internal bleeding, it can cause arrhythmias of the heart, it can

cause problems in the liver -- there are any number of ways it can get

to you, " Varlotta added.

However, long-familiar brands like Bengay (which first debuted in

U.S. drug stores more than 100 years ago) don't set off alarm bells in

most Americans' minds, so the temptation to overuse them is there,

Varlotta said.

And while most people would definitely think twice about swallowing

a fistful of aspirin or other OTC pills, people forget that creams

carry dangers, too.

" Remember, there are a whole variety of [medicinal] products that

are specifically formulated to be absorbed through the skin, " Varlotta

said. As with any drug, moderation is key, another expert added.

" You have to follow the directions, because the poison is in the

dose, " advised Elena Juris, an education outreach specialist at the

American Association of Poison Control Centers in Washington, D.C. And

that maxim applies to creams just as much as it does to pills, she said.

Her groups' statistics for 2005 show that 14 Americans died from

skin exposures to some kind of toxic substance, although a breakdown on

exactly which substances caused those deaths has not yet been compiled,

Juris said.

However, she noted that, " the seventh most common substances

involved in human exposures from poisoning are, in fact, topical

preparations. In 2005, poison control centers reported 109,831

exposures related to topical substances. "

Newman's Bengay-linked death was an extremely rare occurrence, however, and & , which makes the cream, told AP

that their product " is safe and effective when used as directed to

provide relief from minor arthritis pain, sore, aching and strained

muscles and backaches. "

Similar to advice given for prescription drugs, it's crucial that

consumers carefully read label instructions and warnings for all OTC

products. Varlotta believes that the cautions could be better

highlighted, however.

" If you look at all of these [OTC] products, you cannot tell

anything from the outside of the box, " he said. In the case of the

Bengay that Newman used, " there's nothing in big letters that says that

it contains aspirin, " Varlotta said. " It's in the fine print. "

Many consumers also fail to realize that the same drug can pop up in multiple, and very different, OTC products.

" Cough and cold preparations are a common mistake, " Juris said. " You

might be taking a cold preparation that includes acetaminophen, and you

also take acetaminophen [pills] for headache. So, you are overdosing it

right there. So, it's not just looking at the label for directions,

it's also making sure that you are not combining products and

increasing the recommended dosage. "

Other OTC products on Varlotta's radar include the painkillers Advil

or Motrin (two or three OTC pills equal the dose in one

prescription-strength pill, he noted), a host of poorly regulated

herbals and dietary supplements, and Voltaren, an anti-inflammatory

muscle cream that many of his patients bring back with them from Europe.

Voltaren isn't approved for OTC sale in the United States, Varlotta

said, but it can cause real problems for Americans who bring it home.

" People come back, and they are given a prescription by their

doctor for another anti-inflammatory, so that means they're now using

the cream plus the anti-inflammatory, and they end up getting

gastrointestinal problems, bleeding, " he said. " And then I tell them:

'Let me see the cream.' And sure enough, it's Voltaren or some other

cream they've brought back. "

The bottom line, according to the experts, is that every drug -- even a nonprescription cream -- comes with some level of risk.

" Just because it's OTC doesn't mean that it's entirely safe and that

it can be used against the directions that are being set out by the

makers, " Varlotta said. " People should know what they are taking, both

orally and on their skin. "

HealthDay

Related News:

More News on Drug Safety More News on Over-the-Counter Medicines

More News on Pain Relievers

July 19, 2007

I read about this when it happened and about fell off my chair. My daughter is a high school teacher and track and cross country coach so this was of special interest to her too. I used to use Bengay like it was "going out of style". Probably overdosed my hubby too b/c he would put it on my back (more like slather it). Triples yikes!!!Blessings,BeckyRose wrote: From: LiveSimply <quackadillian (AT) gmail (DOT) com> To: Neurosarcoidosis Subject: Re:

intense foot pain Sent: Wednesday, July 18, 2007 12:21 PM PLEASE BE CAREFUL WITH THINGS LIKE ADVIL CREAM BECAUSE THEY CAN GIVE YOU AN OVERDOSE OF THESE NSAIDS WHICH CAN DAMAGE YOUR LIVER/KIDNEYS SERIOUSLY..See http://www.nlm.nih.gov/medlineplus/news/fullstory_50982.html Bengay Death Highlights OTC DangersJust because it's nonprescription doesn't mean it's harmless, experts caution in wake of teen track star's overdose from sports cream FRIDAY, June 15 (HealthDay News) -- The bizarre death of a New York City high school track star from a muscle pain cream overdose is raising a red flag once again on the hazards of overusing common over-the-counter medications, experts

say. The New York City medical examiner's office ruled last week that 17-year-old cross-country runner Arielle Newman died from an accidental overdose of methyl salicylate, the wintergreen-scented ingredient found in popular sports balms. To help ease exercise-related discomfort, the Staten Island teenager reportedly had been putting Bengay on her legs between running meets, while also using adhesive pads with methyl salicylate, an aspirin-like anti-inflammatory, and a third product, according to the Associated Press. "There were multiple products, used to great excess," Ellen Borakove, a spokeswoman for the NYC medical examiner's office, told the AP. All of the products can be found as nonprescription items on drug store shelves. But over-the-counter almost never means "harmless," experts warned. Methyl salicylate, or salicylic acid, is the active ingredient in creams such as Bengay, Icy Hot and

Tiger Balm, as well as aspirin, and "is potentially harmful if it is overused," said Dr. Gerard Varlotta, the director of sport rehabilitation at Rusk Institute of Rehabilitation Medicine in New York City. An anti-clotting agent, salicyclic acid at very high doses "can cause internal bleeding, it can cause arrhythmias of the heart, it can cause problems in the liver -- there are any number of ways it can get to you," Varlotta added. However, long-familiar brands like Bengay (which first debuted in U.S. drug stores more than 100 years ago) don't set off alarm bells in most Americans' minds, so the temptation to overuse them is there, Varlotta said. And while most people would definitely think twice about swallowing a fistful of aspirin or other OTC pills, people forget that creams carry dangers, too. "Remember, there are a whole variety of [medicinal] products that are specifically formulated to be absorbed through the skin,"

Varlotta said. As with any drug, moderation is key, another expert added. "You have to follow the directions, because the poison is in the dose," advised Elena Juris, an education outreach specialist at the American Association of Poison Control Centers in Washington, D.C. And that maxim applies to creams just as much as it does to pills, she said. Her groups' statistics for 2005 show that 14 Americans died from skin exposures to some kind of toxic substance, although a breakdown on exactly which substances caused those deaths has not yet been compiled, Juris said. However, she noted that, "the seventh most common substances involved in human exposures from poisoning are, in fact, topical preparations. In 2005, poison control centers reported 109,831 exposures related to topical substances." Newman's Bengay-linked death was an extremely rare occurrence, however, and & , which makes the cream, told

AP that their product "is safe and effective when used as directed to provide relief from minor arthritis pain, sore, aching and strained muscles and backaches." Similar to advice given for prescription drugs, it's crucial that consumers carefully read label instructions and warnings for all OTC products. Varlotta believes that the cautions could be better highlighted, however. "If you look at all of these [OTC] products, you cannot tell anything from the outside of the box," he said. In the case of the Bengay that Newman used, "there's nothing in big letters that says that it contains aspirin," Varlotta said. "It's in the fine print." Many consumers also fail to realize that the same drug can pop up in multiple, and very different, OTC products. "Cough and cold preparations are a common mistake," Juris said. "You might be taking a cold preparation that includes acetaminophen, and you also take acetaminophen [pills] for

headache. So, you are overdosing it right there. So, it's not just looking at the label for directions, it's also making sure that you are not combining products and increasing the recommended dosage." Other OTC products on Varlotta's radar include the painkillers Advil or Motrin (two or three OTC pills equal the dose in one prescription-strength pill, he noted), a host of poorly regulated herbals and dietary supplements, and Voltaren, an anti-inflammatory muscle cream that many of his patients bring back with them from Europe. Voltaren isn't approved for OTC sale in the United States, Varlotta said, but it can cause real problems for Americans who bring it home. "People come back, and they are given a prescription by their doctor for another anti-inflammatory, so that means they're now using the cream plus the anti-inflammatory, and they end up getting gastrointestinal problems, bleeding," he said. "And then I tell them: 'Let me see

the cream.' And sure enough, it's Voltaren or some other cream they've brought back." The bottom line, according to the experts, is that every drug -- even a nonprescription cream -- comes with some level of risk. "Just because it's OTC doesn't mean that it's entirely safe and that it can be used against the directions that are being set out by the makers," Varlotta said. "People should know what they are taking, both orally and on their skin."HealthDayCopyright © 2007 ScoutNews, LLC. All rights reserved.Related News: More News on Drug Safety More News on Over-the-Counter Medicines More News on Pain Relievers

Need a brain boost? Recharge with a stimulating game. Play now! Date: Wed, 18 Jul 2007 13:21:02 -0400To: Neurosarcoidosis From: LiveSimply Subject: Re: intense foot pain PLEASE BE CAREFUL WITH THINGS LIKE ADVIL CREAM BECAUSE THEY CAN GIVE YOU AN OVERDOSE OF THESE NSAIDS WHICH CAN DAMAGE YOUR LIVER/KIDNEYS SERIOUSLY..See http://www.nlm.nih.gov/medlineplus/news/fullstory_50982.htmlBengay Death Highlights OTC Dangers Just because it's nonprescription doesn't mean it's harmless, experts caution in wake of teen track star's overdose from sports creamFRIDAY, June 15 (HealthDay News) -- The bizarre death of a New York City high school track star from a muscle pain cream overdose is raising a red flag once again on the hazards of overusing common over-the-counter medications, experts say. The New York City medical examiner's office ruled last week that 17-year-old cross-country runner Arielle Newman died from an accidental overdose of methyl salicylate, the wintergreen-scented ingredient found in popular sports balms. To help ease exercise-related discomfort, the Staten Island teenager reportedly had been putting Bengay on her legs between running meets, while also using adhesive pads with methyl salicylate, an aspirin-like anti-inflammatory, and a third product, according to the Associated Press.

"There were multiple products, used to great excess," Ellen Borakove, a spokeswoman for the NYC medical examiner's office, told the AP. All of the products can be found as nonprescription items on drug store shelves. But over-the-counter almost never means "harmless," experts warned. Methyl salicylate, or salicylic acid, is the active ingredient in creams such as Bengay, Icy Hot and Tiger Balm, as well as aspirin, and "is potentially harmful if it is overused," said Dr. Gerard Varlotta, the director of sport rehabilitation at Rusk Institute of Rehabilitation Medicine in New York City. An anti-clotting agent, salicyclic acid at very high doses "can cause internal bleeding, it can cause arrhythmias of the heart, it can cause problems in the liver -- there are any number of ways it can get to you," Varlotta added. However, long-familiar brands like Bengay (which first debuted in U.S. drug stores more than 100

years ago) don't set off alarm bells in most Americans' minds, so the temptation to overuse them is there, Varlotta said. And while most people would definitely think twice about swallowing a fistful of aspirin or other OTC pills, people forget that creams carry dangers, too. "Remember, there are a whole variety of [medicinal] products that are specifically formulated to be absorbed through the skin," Varlotta said. As with any drug, moderation is key, another expert added. "You have to follow the directions, because the poison is in the dose," advised Elena Juris, an education outreach specialist at the American Association of Poison Control Centers in Washington, D.C. And that maxim applies to creams just as much as it does to pills, she said. Her groups' statistics for 2005 show that 14 Americans died from skin exposures to some kind of toxic substance, although a breakdown on exactly which substances caused

those deaths has not yet been compiled, Juris said. However, she noted that, "the seventh most common substances involved in human exposures from poisoning are, in fact, topical preparations. In 2005, poison control centers reported 109,831 exposures related to topical substances." Newman's Bengay-linked death was an extremely rare occurrence, however, and & , which makes the cream, told AP that their product "is safe and effective when used as directed to provide relief from minor arthritis pain, sore, aching and strained muscles and backaches." Similar to advice given for prescription drugs, it's crucial that consumers carefully read label instructions and warnings for all OTC products. Varlotta believes that the cautions could be better highlighted, however. "If you look at all of these [OTC] products, you cannot tell anything from the outside of the box," he said. In the case of the Bengay that

Newman used, "there's nothing in big letters that says that it contains aspirin," Varlotta said. "It's in the fine print." Many consumers also fail to realize that the same drug can pop up in multiple, and very different, OTC products. "Cough and cold preparations are a common mistake," Juris said. "You might be taking a cold preparation that includes acetaminophen, and you also take acetaminophen [pills] for headache. So, you are overdosing it right there. So, it's not just looking at the label for directions, it's also making sure that you are not combining products and increasing the recommended dosage." Other OTC products on Varlotta's radar include the painkillers Advil or Motrin (two or three OTC pills equal the dose in one prescription-strength pill, he noted), a host of poorly regulated herbals and dietary supplements, and Voltaren, an anti-inflammatory muscle cream that many of his patients bring back with them from

Europe. Voltaren isn't approved for OTC sale in the United States, Varlotta said, but it can cause real problems for Americans who bring it home. "People come back, and they are given a prescription by their doctor for another anti-inflammatory, so that means they're now using the cream plus the anti-inflammatory, and they end up getting gastrointestinal problems, bleeding," he said. "And then I tell them: 'Let me see the cream.' And sure enough, it's Voltaren or some other cream they've brought back." The bottom line, according to the experts, is that every drug -- even a nonprescription cream -- comes with some level of risk. "Just because it's OTC doesn't mean that it's entirely safe and that it can be used against the directions that are being set out by the makers," Varlotta said. "People should know what they are taking, both orally and on their skin." HealthDay Copyright © 2007 ScoutNews, LLC. All rights reserved. Related News: More News on Drug Safety More News on Over-the-Counter Medicines More News on Pain Relievers

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July 19, 2007

The NAC (n-acetylcysteine) that I posted info on the other day is used in hospitals (in high doses) as an antidote for Tylenol-like overdose in people. (which can destroy people's livers, kidneys, etc.)See

http://ndt.oxfordjournals.org/cgi/content/abstract/gfm113v1 Silymarin (which originally was discovered in Milk Thistle extract) is also used to prevent kidney damage in some kinds of poisonings..So, make sure to read the labels on these products and follow them (especially dont use two at one time.. like a OTC pain releiver pill and a NSAID cream at the same time or on the same day) and you should also ask your doctor if you might even want to be taking something like NAC, milk thistle, etc. to protect your liver, kidneys.. etc. even if you take recommended doses..

I read about this when it happened and about fell off my chair. My daughter is a high school teacher and track and cross country coach so this was of special interest to her too. I used to use Bengay like it was " going out of style " . Probably overdosed my hubby too b/c he would put it on my back (more like slather it). Triples yikes!!!

Blessings,Becky

July 21, 2007

Kat I get toe cramps and I also wear big thick mens hunting socks. I can't wear any shoe except a well constructed athletic shoe. Dr Sholl also makes an excellent gymmer with gel pads built into the insole.grannylunatic@...

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July 21, 2007

My toes have cramped for so long that they have become deformed, with the 3 middle ones developing a bump sticking up that sometimes rubs on my shoes. I don't usually feel it, but will notice reddening or even a slight blister & have to wear a bandaid for awhile.

I saw a podiatrist yesterday. I had taken my mom to see him for diabetic foot care & was impressed with his attitude & his assessment skills. He ordered a doppler study of my feet, because he couldn't feel any of the pulses in my feet. One of my doctors commented last year that the pulses were weaker in the right foot, but didnt seem too concerned & I sort of let it go. I did try to check the pulses, since that was one of nursing skills that I was quite good at. But my fingertips are so numb that I couldn't feel anything; I can barely feel the radial pulse & the carotid. But I have noticed that my feet are feeling colder; I'm having to wear 2 thick sox, plus the rice sox or heating pad & 2 blankets wrapped around my feet. So, the doppler should be interesting,

Today I went to an all-day retreat associated with the minfulness-based stress reduction class I'm taking. I knew that my dogs would be barking LOUDLY by the end of the day, especially with a one hour drive each way. So I wore a pair of my handwarmers (hunters use them; the handwarmers work better for me than the toewarmers & last longer), with two pair of my nice thick sox, and my two favorite fleece blankets--Elvis & snowflakes. Who better to spend a retreat with than Elvis?!? I also took a rolled-up piece of foam to elevate my feet. All this worked pretty well, although my feet were pretty sensitive just to press on the gas or brake pedal by the time I got back home.

Feet--boy, I should write a tribute to feet. What misery they can cause. Years ago a major league pitcher had a small blister on his toe. This caused him to alter his delivery slightly, putting unusual tension on his arm & he blew out his arm. End of career, just because of a blister.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: intense foot painDate: Sat, 21 Jul 2007 07:40:26 -0700 (PDT)

Kat

I get toe cramps and I also wear big thick mens hunting socks. I can't wear any shoe except a well constructed athletic shoe. Dr Sholl also makes an excellent gymmer with gel pads built into the insole.grannylunatic (AT) yahoo (DOT) com

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July 22, 2007

I, too have intense foot pain, especially with what feels like tightened tendons in the bottom of my feet. My toes cramp up frequently. I can only wear those shoes they give you for broken toes or bones in feet because I can't have anything touch my toes as this will set off the cramping. This is my first letter to the chat room. I was diagnosed with sarcoidosis after a bout of erythema nodosum and removal of my parotid ( one of the glands of that makes saliva). I now have it in my heart and was recently diagnosed with neuro sarcoidosis. The prednisone is making me fat, messing with my diabetes control and making my moods run amuck. I am tolerating the methotrexate well. But no matter what, I plan to fight. But I'mreally angry that there is nothing more that they can do to treat it. I can't even find any clinical studies being conducted. Isn't anyone interestedin finding a cure? I am, because I know that because of

the heart involvement, I know I will die without a cure. The doctors tell me that a transplant isn't even possible because the disease will return in the new heart. I am hoping to hear from others in this same predicament. Sincerely, The new kid on the block: Mc- WelshRose wrote: My toes have cramped for so long that they have become deformed, with the 3 middle ones developing a bump sticking up that

sometimes rubs on my shoes. I don't usually feel it, but will notice reddening or even a slight blister & have to wear a bandaid for awhile. I saw a podiatrist yesterday. I had taken my mom to see him for diabetic foot care & was impressed with his attitude & his assessment skills. He ordered a doppler study of my feet, because he couldn't feel any of the pulses in my feet. One of my doctors commented last year that the pulses were weaker in the right foot, but didnt seem too concerned & I sort of let it go. I did try to check the pulses, since that was one of nursing skills that I was quite good at. But my fingertips are so numb that I couldn't feel anything; I can barely feel the radial pulse & the carotid. But I have noticed that my feet are feeling colder; I'm having to wear 2 thick sox, plus the rice sox or heating pad & 2 blankets wrapped around my feet. So, the

doppler should be interesting, Today I went to an all-day retreat associated with the minfulness-based stress reduction class I'm taking. I knew that my dogs would be barking LOUDLY by the end of the day, especially with a one hour drive each way. So I wore a pair of my handwarmers (hunters use them; the handwarmers work better for me than the toewarmers & last longer), with two pair of my nice thick sox, and my two favorite fleece blankets--Elvis & snowflakes. Who better to spend a retreat with than Elvis?!? I also took a rolled-up piece of foam to elevate my feet. All this worked pretty well, although my feet were pretty sensitive just to press on the gas or brake pedal by the time I got back home. Feet--boy, I should write a tribute to feet. What misery they can cause. Years ago a major league pitcher had a small blister on his toe. This caused him to

alter his delivery slightly, putting unusual tension on his arm & he blew out his arm. End of career, just because of a blister. Ramblin' Rose Moderator From: <grannylunatic (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: intense foot painDate: Sat, 21 Jul 2007 07:40:26 -0700 (PDT) Kat I get toe cramps and I also wear big thick mens hunting socks. I can't wear any shoe except a well constructed athletic shoe. Dr Sholl also makes an excellent gymmer with gel pads built into the insole.grannylunatic (AT) yahoo (DOT) com Pinpoint customers who are looking for what you sell. Need a brain boost? Recharge with a stimulating game. Play now!

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July 22, 2007

Hi ,I too have cardiac sarcoidosis as well as in many other places. I had an AICD placed in January. Has your dr talked to you about an AICD? What kind of heart symptoms have you had? It can be scary for sure. I've been on prednisone for 3 yrs and have gained a lot of weight. I feel like a puffer fish: bloated. There are clinical trials...although I am in a research study at s Hopkins and got started on the cellcept from there, it wasn't as part of the study. The study I'm a part of is a genetic one. There is a clinical trial being done at MUSC by Dr. Judson. It may be full now. Another place to check is National Institute of Health. It is unbelieveable that more isn't being done. It's especially crazy that many physicians either aren't educated about sarcoidosis or plain and simple just don't have an interest/care. We're not going to die ...we are going to FIGHT this nasty disease and keep spreading the word by any/every means possible to educate

people. Someone at FSR was trying to begin an "Oprah" campaign to see if enough people would write her online to ask her to do a show on sarcoidosis. As far as I know, there has been no response. I'm so sorry that you have this disease but am glad that you posted. You have had a hard time I can tell. For me the most frustrating part of this disease has been the search (I was successful) for a caring sarcoidosis specialist. Most of my other drs admitted they didn't know enough about it to tx me. Then two got mad b/c the specialist stepped in and said do this or do that...BUT this is my life and I'm not going out till way past when the "fat lady sings". Faith, family, and friends get me through. God bless you,Becky Mc-Welsh wrote: I, too have intense foot pain, especially with what feels like tightened tendons in the bottom of my feet. My toes cramp up frequently. I can only wear those shoes they give you for broken toes or bones in feet because I can't have anything touch my toes as this will set off the cramping. This is my first letter to the chat room. I was diagnosed with sarcoidosis after a bout of erythema nodosum and removal of my parotid ( one of the glands of that makes saliva). I now have it in my heart and was recently diagnosed with neuro sarcoidosis. The prednisone is making me fat, messing with my diabetes control and making my moods run amuck. I am tolerating the

methotrexate well. But no matter what, I plan to fight. But I'mreally angry that there is nothing more that they can do to treat it. I can't even find any clinical studies being conducted. Isn't anyone interestedin finding a cure? I am, because I know that because of the heart involvement, I know I will die without a cure. The doctors tell me that a transplant isn't even possible because the disease will return in the new heart. I am hoping to hear from others in this same predicament. Sincerely, The new kid on the block: Mc- WelshRose <mamadogrose (AT) hotmail (DOT) com> wrote: My toes have cramped for so long that they have become deformed, with the 3 middle ones developing a bump sticking up that sometimes rubs on my shoes. I don't usually feel it, but will notice reddening or even a slight blister & have to wear a bandaid for awhile. I saw a podiatrist yesterday. I had taken my mom to see him for diabetic foot care & was impressed with his attitude & his assessment skills. He ordered a doppler study of my feet, because he couldn't feel any of the pulses in my feet. One of my doctors commented last year that the pulses were weaker in the right foot, but didnt seem too concerned & I sort of let it go. I did try to check the pulses, since that was one of nursing skills that I was quite good at. But my fingertips are so numb that I couldn't feel anything; I can barely feel the radial pulse & the carotid. But I have noticed that my feet are feeling colder; I'm having to wear 2 thick sox, plus the rice sox or heating pad & 2 blankets wrapped around my feet. So, the doppler should be interesting, Today I went to an all-day retreat associated with the minfulness-based stress reduction class I'm taking. I knew that my dogs would be barking LOUDLY by the end of the day, especially with a one hour drive each way. So I wore a pair of my handwarmers (hunters use them; the handwarmers work better for me than the toewarmers & last longer), with two pair of my nice thick sox, and my two favorite fleece blankets--Elvis & snowflakes. Who better to spend a retreat with than Elvis?!? I also took a rolled-up piece of foam to elevate my feet. All this worked pretty well, although my feet were pretty sensitive just to press on the gas or brake pedal by the time I got back home. Feet--boy, I should write a tribute to feet. What misery they can cause. Years ago a major league pitcher had a small blister on his toe. This caused him

to alter his delivery slightly, putting unusual tension on his arm & he blew out his arm. End of career, just because of a blister. Ramblin' Rose Moderator From: <grannylunatic (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: intense foot painDate: Sat, 21 Jul 2007 07:40:26 -0700 (PDT) Kat I get toe cramps and I also wear big thick mens hunting socks. I can't wear any shoe except a well constructed athletic shoe. Dr Sholl also makes an excellent gymmer with gel pads built into the insole.grannylunatic (AT) yahoo (DOT) com Pinpoint customers who are looking for what you sell. Need a brain boost? Recharge with a stimulating game. Play now! Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool.

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July 22, 2007

Hey, New Kid! the nice thing about this neighborhood is that we don't pick on the new kids. Do you mind telling us where you live, and how long ago you were first diagnosed with sarc?

Actually, , there is research now going on. Probably the best place to find the latest is at FSR (Foundation for Sarcoidosis Research). Their website is at info@.... You can subscribe to a monthly email update. Tracie, one of our co-owners/moderators, participated in a large, multi-centered, multi-nation clinical trial of Remicade. I tried to get into the trial in Indianapolis, but my lung function wasnt bad enough. They were looking specifically at lung function, but Tracie has noticed improvement in several areas. After the trial ended, she was started on Remicade after a skirmish with her insurance company. We have another member in the Netherlands who is currently involved with a clinical trial on small fiber neuropathy, and I believe something about fatigue.

So there is work being done & treatment options have expanded greatly in the last couple of years. You want to make sure that your medical team is up-to-date on the recent studies & current treatment options. I think that more doctors are realizing that sarcoidosis isn't necessarily such an innocent little character, and that NS & other complications aren't so much "rare" as underdiagnosed or misdiagnosed. None of us are medical doctors, at least not anymore, but many of us are nurses or others in the health care field. And many more have put in countless hours of research to learn more than most doctors will ever know about suckoidosis, or the sarc monster as we affectionately call it.

Kiddo, you've come to the right place! This is a place to ask questions, complain, whine, cuss, whatever you need. We have a wealth of info in the Archives, as well as some excellent resources in the Links section. There will be a live chat tonight at 9pm EDT. The link to the chat room, along with the Archives, Links, etc., is at the bottom of this & every other group message. I posted a message earlier today regarding the chat room.

I'm glad you've found us, although having multisystem sarcoidosis is a heck of a way to widen your circle of friends.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: intense foot painDate: Sun, 22 Jul 2007 08:56:10 -0700 (PDT)

I, too have intense foot pain, especially with what feels like tightened tendons in the bottom of my feet. My toes cramp up frequently. I can only wear those shoes they give you for broken toes or bones in feet because I can't have anything touch my toes as this will set off the cramping. This is my first letter to the chat room. I was diagnosed with sarcoidosis after a bout of erythema nodosum and removal of my parotid ( one of the glands of that makes saliva). I now have it in my heart and was recently diagnosed with neuro sarcoidosis. The prednisone is making me fat, messing with my diabetes control and making my moods run amuck. I am tolerating the methotrexate well. But no matter what, I plan to fight. But I'mreally angry that there is nothing more that they can do to treat it. I can't even find any clinical studies being conducted. Isn't anyone interestedin finding a cure? I am, because I know that because of the heart involvement, I know I will die without a cure. The doctors tell me that a transplant isn't even possible because the disease will return in the new heart. I am hoping to hear from others in this same predicament.

Sincerely,

The new kid on the block: Mc- WelshRose <mamadogrose (AT) hotmail (DOT) com> wrote:

My toes have cramped for so long that they have become deformed, with the 3 middle ones developing a bump sticking up that sometimes rubs on my shoes. I don't usually feel it, but will notice reddening or even a slight blister & have to wear a bandaid for awhile.

I saw a podiatrist yesterday. I had taken my mom to see him for diabetic foot care & was impressed with his attitude & his assessment skills. He ordered a doppler study of my feet, because he couldn't feel any of the pulses in my feet. One of my doctors commented last year that the pulses were weaker in the right foot, but didnt seem too concerned & I sort of let it go. I did try to check the pulses, since that was one of nursing skills that I was quite good at. But my fingertips are so numb that I couldn't feel anything; I can barely feel the radial pulse & the carotid. But I have noticed that my feet are feeling colder; I'm having to wear 2 thick sox, plus the rice sox or heating pad & 2 blankets wrapped around my feet. So, the doppler should be interesting,

Today I went to an all-day retreat associated with the minfulness-based stress reduction class I'm taking. I knew that my dogs would be barking LOUDLY by the end of the day, especially with a one hour drive each way. So I wore a pair of my handwarmers (hunters use them; the handwarmers work better for me than the toewarmers & last longer), with two pair of my nice thick sox, and my two favorite fleece blankets--Elvis & snowflakes. Who better to spend a retreat with than Elvis?!? I also took a rolled-up piece of foam to elevate my feet. All this worked pretty well, although my feet were pretty sensitive just to press on the gas or brake pedal by the time I got back home.

Feet--boy, I should write a tribute to feet. What misery they can cause. Years ago a major league pitcher had a small blister on his toe. This caused him to alter his delivery slightly, putting unusual tension on his arm & he blew out his arm. End of career, just because of a blister.

Ramblin' Rose

Moderator

From: <grannylunatic (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: intense foot painDate: Sat, 21 Jul 2007 07:40:26 -0700 (PDT)

Kat

I get toe cramps and I also wear big thick mens hunting socks. I can't wear any shoe except a well constructed athletic shoe. Dr Sholl also makes an excellent gymmer with gel pads built into the insole.grannylunatic (AT) yahoo (DOT) com

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July 23, 2007

Wow Becky, I know you wrote this post to the other '' but I also found it very encouraging. Very often I need those 'keep on fighting'messages, too. Thanks for being you. hugs S.Mac Tosh wrote: Hi ,I too have cardiac sarcoidosis as well as in many other places. I had an AICD placed in January. Has your dr talked to you about an AICD?

What kind of heart symptoms have you had? It can be scary for sure. I've been on prednisone for 3 yrs and have gained a lot of weight. I feel like a puffer fish: bloated. There are clinical trials...although I am in a research study at s Hopkins and got started on the cellcept from there, it wasn't as part of the study. The study I'm a part of is a genetic one. There is a clinical trial being done at MUSC by Dr. Judson. It may be full now. Another place to check is National Institute of Health. It is unbelieveable that more isn't being done. It's especially crazy that many physicians either aren't educated about sarcoidosis or plain and simple just don't have an interest/care. We're not going to die ...we are going to FIGHT this nasty disease and keep spreading the word by any/every means possible to educate people. Someone at FSR was trying to begin an "Oprah" campaign to see if enough people would write her online to ask her to do a show on sarcoidosis. As

far as I know, there has been no response. I'm so sorry that you have this disease but am glad that you posted. You have had a hard time I can tell. For me the most frustrating part of this disease has been the search (I was successful) for a caring sarcoidosis specialist. Most of my other drs admitted they didn't know enough about it to tx me. Then two got mad b/c the specialist stepped in and said do this or do that...BUT this is my life and I'm not going out till way past when the "fat lady sings". Faith, family, and friends get me through. God bless you,Becky Mc-Welsh <rn4kidsbps (AT) yahoo (DOT) com> wrote: I, too have intense foot pain, especially with what feels like tightened tendons in the bottom of my feet. My toes cramp up frequently. I can

only wear those shoes they give you for broken toes or bones in feet because I can't have anything touch my toes as this will set off the cramping. This is my first letter to the chat room. I was diagnosed with sarcoidosis after a bout of erythema nodosum and removal of my parotid ( one of the glands of that makes saliva). I now have it in my heart and was recently diagnosed with neuro sarcoidosis. The prednisone is making me fat, messing with my diabetes control and making my moods run amuck. I am tolerating the methotrexate well. But no matter what, I plan to fight. But I'mreally angry that there is nothing more that they can do to treat it. I can't even find any clinical studies being conducted. Isn't anyone interestedin finding a cure? I am, because I know that because of the heart involvement, I know I will die without a cure. The doctors tell me that a transplant isn't even possible because the disease will return in

the new heart. I am hoping to hear from others in this same predicament. Sincerely, The new kid on the block: Mc- WelshRose <mamadogrose (AT) hotmail (DOT) com> wrote: My toes have cramped for so long that they have become deformed, with the 3 middle ones developing a bump sticking up that sometimes rubs on my shoes. I don't usually feel it, but will notice reddening or even a slight blister & have to wear a bandaid for awhile. I saw a podiatrist yesterday. I had taken my mom to see him for diabetic foot care & was impressed with his attitude & his assessment skills. He ordered a doppler study of my feet, because he couldn't feel any of the pulses in my

feet. One of my doctors commented last year that the pulses were weaker in the right foot, but didnt seem too concerned & I sort of let it go. I did try to check the pulses, since that was one of nursing skills that I was quite good at. But my fingertips are so numb that I couldn't feel anything; I can barely feel the radial pulse & the carotid. But I have noticed that my feet are feeling colder; I'm having to wear 2 thick sox, plus the rice sox or heating pad & 2 blankets wrapped around my feet. So, the doppler should be interesting, Today I went to an all-day retreat associated with the minfulness-based stress reduction class I'm taking. I knew that my dogs would be barking LOUDLY by the end of the day, especially with a one hour drive each way. So I wore a pair of my handwarmers (hunters use them; the handwarmers work better for me than the toewarmers & last longer), with two

pair of my nice thick sox, and my two favorite fleece blankets--Elvis & snowflakes. Who better to spend a retreat with than Elvis?!? I also took a rolled-up piece of foam to elevate my feet. All this worked pretty well, although my feet were pretty sensitive just to press on the gas or brake pedal by the time I got back home. Feet--boy, I should write a tribute to feet. What misery they can cause. Years ago a major league pitcher had a small blister on his toe. This caused him to alter his delivery slightly, putting unusual tension on his arm & he blew out his arm. End of career, just because of a blister. Ramblin' Rose Moderator From: <grannylunatic (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: intense foot painDate: Sat, 21 Jul 2007 07:40:26 -0700 (PDT) Kat I get toe cramps and I also wear big thick mens hunting socks. I can't wear any shoe except a well constructed athletic shoe. Dr Sholl also makes an excellent gymmer with gel pads built into the

insole.grannylunatic (AT) yahoo (DOT) com Pinpoint customers who are looking for what you sell. Need a brain boost? Recharge with a stimulating game. Play now! Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool. Shape Yahoo! in your own image. Join our Network Research Panel today!

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July 23, 2007

Hi S., I'm glad this helped you. Your message was really nice. We ARE going to get through this. Blessings,Becky Solberg wrote: Wow Becky, I know you wrote this post to the other '' but I also found it very encouraging. Very often I need those 'keep on fighting'messages, too. Thanks for being you. hugs

S.Mac Tosh <macandtosh626 (AT) yahoo (DOT) com> wrote: Hi ,I too have cardiac sarcoidosis as well as in many other places. I had an AICD placed in January. Has your dr talked to you about an AICD? What kind of heart symptoms have you had? It can be scary for sure. I've been on prednisone for 3 yrs and have gained a lot of weight. I feel like a puffer fish: bloated. There are clinical trials...although I am in a research study at s Hopkins and got started on the cellcept from there, it wasn't as part of the study. The study I'm a part of is a genetic one. There is a clinical trial being done at MUSC by Dr. Judson. It may be full now. Another place to check is National Institute of Health. It is unbelieveable that more isn't being done. It's especially crazy

that many physicians either aren't educated about sarcoidosis or plain and simple just don't have an interest/care. We're not going to die ...we are going to FIGHT this nasty disease and keep spreading the word by any/every means possible to educate people. Someone at FSR was trying to begin an "Oprah" campaign to see if enough people would write her online to ask her to do a show on sarcoidosis. As far as I know, there has been no response. I'm so sorry that you have this disease but am glad that you posted. You have had a hard time I can tell. For me the most frustrating part of this disease has been the search (I was successful) for a caring sarcoidosis specialist. Most of my other drs admitted they didn't know enough about it to tx me. Then two got mad b/c the specialist stepped in and said do this or do that...BUT this is my life and I'm not going out till way past when the "fat lady sings". Faith, family, and friends get me through. God bless

you,Becky Mc-Welsh <rn4kidsbps (AT) yahoo (DOT) com> wrote: I, too have intense foot pain, especially with what feels like tightened tendons in the bottom of my feet. My toes cramp up frequently. I can only wear those shoes they give you for broken toes or bones in feet because I can't have anything touch my toes as this will set off the cramping. This is my first letter to the chat room. I was diagnosed with sarcoidosis after a bout of erythema nodosum and removal of my parotid ( one of the glands of that makes saliva). I now have it in my heart and was recently diagnosed with neuro sarcoidosis. The prednisone is making me fat, messing with my diabetes control and making my moods run amuck. I am tolerating the methotrexate

well. But no matter what, I plan to fight. But I'mreally angry that there is nothing more that they can do to treat it. I can't even find any clinical studies being conducted. Isn't anyone interestedin finding a cure? I am, because I know that because of the heart involvement, I know I will die without a cure. The doctors tell me that a transplant isn't even possible because the disease will return in the new heart. I am hoping to hear from others in this same predicament. Sincerely, The new kid on the block: Mc- WelshRose <mamadogrose (AT) hotmail (DOT) com> wrote: My toes have cramped for so long that they have become deformed, with the 3 middle ones developing a bump sticking up that sometimes rubs

on my shoes. I don't usually feel it, but will notice reddening or even a slight blister & have to wear a bandaid for awhile. I saw a podiatrist yesterday. I had taken my mom to see him for diabetic foot care & was impressed with his attitude & his assessment skills. He ordered a doppler study of my feet, because he couldn't feel any of the pulses in my feet. One of my doctors commented last year that the pulses were weaker in the right foot, but didnt seem too concerned & I sort of let it go. I did try to check the pulses, since that was one of nursing skills that I was quite good at. But my fingertips are so numb that I couldn't feel anything; I can barely feel the radial pulse & the carotid. But I have noticed that my feet are feeling colder; I'm having to wear 2 thick sox, plus the rice sox or heating pad & 2 blankets wrapped around my feet. So, the doppler

should be interesting, Today I went to an all-day retreat associated with the minfulness-based stress reduction class I'm taking. I knew that my dogs would be barking LOUDLY by the end of the day, especially with a one hour drive each way. So I wore a pair of my handwarmers (hunters use them; the handwarmers work better for me than the toewarmers & last longer), with two pair of my nice thick sox, and my two favorite fleece blankets--Elvis & snowflakes. Who better to spend a retreat with than Elvis?!? I also took a rolled-up piece of foam to elevate my feet. All this worked pretty well, although my feet were pretty sensitive just to press on the gas or brake pedal by the time I got back home. Feet--boy, I should write a tribute to feet. What misery they can cause. Years ago a major league pitcher had a small blister on his toe. This caused him to alter his delivery slightly, putting unusual tension on his arm & he blew out his arm. End of career, just because of a blister. Ramblin' Rose Moderator From: <grannylunatic (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: intense foot painDate: Sat, 21 Jul 2007 07:40:26 -0700 (PDT) Kat I get toe cramps and I also wear big thick mens hunting socks. I can't wear any shoe except a well constructed athletic shoe. Dr Sholl also makes an excellent gymmer with gel pads built into the insole.grannylunatic (AT) yahoo (DOT) com Pinpoint customers who are looking for what you sell. Need a brain boost? Recharge with a stimulating game. Play now! Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool. Shape Yahoo! in your own image. Join our Network Research Panel today! Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games.

Be a better Heartthrob. Get better relationship answers from someone who knows.Yahoo! Answers - Check it out.

July 23, 2007

I think one of the wonderful things about this group is how we often don't realize how many others need what we have to offer, whether it's comfort, information, encouragement. I can't imagine what my life would be like right now if I hadn't found my NS family several years ago.

Thank you to everyone on this list.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: intense foot painDate: Mon, 23 Jul 2007 07:10:36 -0700 (PDT)

Hi S., I'm glad this helped you. Your message was really nice. We ARE going to get through this. Blessings,Becky Solberg <mary_s777 (AT) yahoo (DOT) com> wrote:

Wow Becky, I know you wrote this post to the other '' but I also found it very encouraging. Very often I need those 'keep on fighting'messages, too. Thanks for being you. hugs S.Mac Tosh <macandtosh626 (AT) yahoo (DOT) com> wrote:

Hi ,I too have cardiac sarcoidosis as well as in many other places. I had an AICD placed in January. Has your dr talked to you about an AICD? What kind of heart symptoms have you had? It can be scary for sure. I've been on prednisone for 3 yrs and have gained a lot of weight. I feel like a puffer fish: bloated. There are clinical trials...although I am in a research study at s Hopkins and got started on the cellcept from there, it wasn't as part of the study. The study I'm a part of is a genetic one. There is a clinical trial being done at MUSC by Dr. Judson. It may be full now. Another place to check is National Institute of Health. It is unbelieveable that more isn't being done. It's especially crazy that many physicians either aren't educated about sarcoidosis or plain and simple just don't have an interest/care. We're not going to die ...we are going to FIGHT this nasty disease and keep spreading the word by any/every means possible to educate people. Someone at FSR was trying to begin an "Oprah" campaign to see if enough people would write her online to ask her to do a show on sarcoidosis. As far as I know, there has been no response. I'm so sorry that you have this disease but am glad that you posted. You have had a hard time I can tell. For me the most frustrating part of this disease has been the search (I was successful) for a caring sarcoidosis specialist. Most of my other drs admitted they didn't know enough about it to tx me. Then two got mad b/c the specialist stepped in and said do this or do that...BUT this is my life and I'm not going out till way past when the "fat lady sings". Faith, family, and friends get me through. God bless you,Becky Mc-Welsh <rn4kidsbps (AT) yahoo (DOT) com> wrote:

I, too have intense foot pain, especially with what feels like tightened tendons in the bottom of my feet. My toes cramp up frequently. I can only wear those shoes they give you for broken toes or bones in feet because I can't have anything touch my toes as this will set off the cramping. This is my first letter to the chat room. I was diagnosed with sarcoidosis after a bout of erythema nodosum and removal of my parotid ( one of the glands of that makes saliva). I now have it in my heart and was recently diagnosed with neuro sarcoidosis. The prednisone is making me fat, messing with my diabetes control and making my moods run amuck. I am tolerating the methotrexate well. But no matter what, I plan to fight. But I'mreally angry that there is nothing more that they can do to treat it. I can't even find any clinical studies being conducted. Isn't anyone interestedin finding a cure? I am, because I know that because of the heart involvement, I know I will die without a cure. The doctors tell me that a transplant isn't even possible because the disease will return in the new heart. I am hoping to hear from others in this same predicament.

Sincerely,

The new kid on the block: Mc- WelshRose <mamadogrose (AT) hotmail (DOT) com> wrote:

My toes have cramped for so long that they have become deformed, with the 3 middle ones developing a bump sticking up that sometimes rubs on my shoes. I don't usually feel it, but will notice reddening or even a slight blister & have to wear a bandaid for awhile.

I saw a podiatrist yesterday. I had taken my mom to see him for diabetic foot care & was impressed with his attitude & his assessment skills. He ordered a doppler study of my feet, because he couldn't feel any of the pulses in my feet. One of my doctors commented last year that the pulses were weaker in the right foot, but didnt seem too concerned & I sort of let it go. I did try to check the pulses, since that was one of nursing skills that I was quite good at. But my fingertips are so numb that I couldn't feel anything; I can barely feel the radial pulse & the carotid. But I have noticed that my feet are feeling colder; I'm having to wear 2 thick sox, plus the rice sox or heating pad & 2 blankets wrapped around my feet. So, the doppler should be interesting,

Today I went to an all-day retreat associated with the minfulness-based stress reduction class I'm taking. I knew that my dogs would be barking LOUDLY by the end of the day, especially with a one hour drive each way. So I wore a pair of my handwarmers (hunters use them; the handwarmers work better for me than the toewarmers & last longer), with two pair of my nice thick sox, and my two favorite fleece blankets--Elvis & snowflakes. Who better to spend a retreat with than Elvis?!? I also took a rolled-up piece of foam to elevate my feet. All this worked pretty well, although my feet were pretty sensitive just to press on the gas or brake pedal by the time I got back home.

Feet--boy, I should write a tribute to feet. What misery they can cause. Years ago a major league pitcher had a small blister on his toe. This caused him to alter his delivery slightly, putting unusual tension on his arm & he blew out his arm. End of career, just because of a blister.

Ramblin' Rose

Moderator

From: <grannylunatic (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: intense foot painDate: Sat, 21 Jul 2007 07:40:26 -0700 (PDT)

Kat

I get toe cramps and I also wear big thick mens hunting socks. I can't wear any shoe except a well constructed athletic shoe. Dr Sholl also makes an excellent gymmer with gel pads built into the insole.grannylunatic (AT) yahoo (DOT) com

Pinpoint customers who are looking for what you sell.

Need a brain boost? Recharge with a stimulating game. Play now!

Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool.

Shape Yahoo! in your own image. Join our Network Research Panel today!

Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games.

Be a better Heartthrob. Get better relationship answers from someone who knows.Yahoo! Answers - Check it out.

See what you’re getting into…before you go there

July 23, 2007

Awwwww...... group hug, everybody! hugs! S. I love you guys.....Rose wrote: I think one of the wonderful things about this group is how we often don't realize how many others need what we have to offer, whether it's comfort, information, encouragement. I can't imagine what my life would be like right now if I hadn't found my NS family several years ago. Thank you to everyone on this list. Ramblin' Rose Moderator From: Mac Tosh <macandtosh626 (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: intense foot painDate: Mon, 23 Jul 2007 07:10:36 -0700 (PDT) Hi S., I'm glad this helped you. Your message was really nice. We ARE going to get through this. Blessings,Becky Solberg <mary_s777 (AT) yahoo (DOT) com> wrote: Wow Becky, I know you wrote this post to the other '' but I also found it very encouraging. Very often I need those 'keep on fighting'messages, too. Thanks for being

you. hugs S.Mac Tosh <macandtosh626 (AT) yahoo (DOT) com> wrote: Hi ,I too have cardiac sarcoidosis as well as in many other places. I had an AICD placed in January. Has your dr talked to you about an AICD? What kind of heart symptoms have you had? It can be scary for sure. I've been on prednisone for 3 yrs and have gained a lot of weight. I feel like a puffer fish: bloated. There are clinical trials...although I am in a research study at s Hopkins and got started on the cellcept from there, it wasn't as part of the study. The study I'm a part of is a genetic one. There is a clinical trial being done at MUSC by Dr. Judson. It may be full now. Another place to check is National Institute of Health. It is unbelieveable that more isn't being done. It's especially crazy that many physicians either aren't educated about sarcoidosis

or plain and simple just don't have an interest/care. We're not going to die ...we are going to FIGHT this nasty disease and keep spreading the word by any/every means possible to educate people. Someone at FSR was trying to begin an "Oprah" campaign to see if enough people would write her online to ask her to do a show on sarcoidosis. As far as I know, there has been no response. I'm so sorry that you have this disease but am glad that you posted. You have had a hard time I can tell. For me the most frustrating part of this disease has been the search (I was successful) for a caring sarcoidosis specialist. Most of my other drs admitted they didn't know enough about it to tx me. Then two got mad b/c the specialist stepped in and said do this or do that...BUT this is my life and I'm not going out till way past when the "fat lady sings". Faith, family, and friends get me through. God bless you,Becky Mc-Welsh

<rn4kidsbps (AT) yahoo (DOT) com> wrote: I, too have intense foot pain, especially with what feels like tightened tendons in the bottom of my feet. My toes cramp up frequently. I can only wear those shoes they give you for broken toes or bones in feet because I can't have anything touch my toes as this will set off the cramping. This is my first letter to the chat room. I was diagnosed with sarcoidosis after a bout of erythema nodosum and removal of my parotid ( one of the glands of that makes saliva). I now have it in my heart and was recently diagnosed with neuro sarcoidosis. The prednisone is making me fat, messing with my diabetes control and making my moods run amuck. I am tolerating the methotrexate well. But no matter what, I plan to fight. But I'mreally angry that there is nothing more that they can do to treat it. I can't even find any

clinical studies being conducted. Isn't anyone interestedin finding a cure? I am, because I know that because of the heart involvement, I know I will die without a cure. The doctors tell me that a transplant isn't even possible because the disease will return in the new heart. I am hoping to hear from others in this same predicament. Sincerely, The new kid on the block: Mc- WelshRose <mamadogrose (AT) hotmail (DOT) com> wrote: My toes have cramped for so long that they have become deformed, with the 3 middle ones developing a bump sticking up that sometimes rubs on my shoes. I don't usually feel it, but will notice reddening or even a slight blister & have to wear a bandaid for awhile. I saw a podiatrist yesterday. I had taken my mom to see him

for diabetic foot care & was impressed with his attitude & his assessment skills. He ordered a doppler study of my feet, because he couldn't feel any of the pulses in my feet. One of my doctors commented last year that the pulses were weaker in the right foot, but didnt seem too concerned & I sort of let it go. I did try to check the pulses, since that was one of nursing skills that I was quite good at. But my fingertips are so numb that I couldn't feel anything; I can barely feel the radial pulse & the carotid. But I have noticed that my feet are feeling colder; I'm having to wear 2 thick sox, plus the rice sox or heating pad & 2 blankets wrapped around my feet. So, the doppler should be interesting, Today I went to an all-day retreat associated with the minfulness-based stress reduction class I'm taking. I knew that my dogs would be barking LOUDLY by the end of the day,

especially with a one hour drive each way. So I wore a pair of my handwarmers (hunters use them; the handwarmers work better for me than the toewarmers & last longer), with two pair of my nice thick sox, and my two favorite fleece blankets--Elvis & snowflakes. Who better to spend a retreat with than Elvis?!? I also took a rolled-up piece of foam to elevate my feet. All this worked pretty well, although my feet were pretty sensitive just to press on the gas or brake pedal by the time I got back home. Feet--boy, I should write a tribute to feet. What misery they can cause. Years ago a major league pitcher had a small blister on his toe. This caused him to alter his delivery slightly, putting unusual tension on his arm & he blew out his arm. End of career, just because of a blister. Ramblin' Rose Moderator From: <grannylunatic (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: intense foot painDate: Sat, 21 Jul 2007 07:40:26 -0700 (PDT) Kat I get toe cramps and I also wear big thick mens hunting socks. I can't wear any shoe except a well constructed athletic shoe. Dr Sholl also makes an excellent gymmer

with gel pads built into the insole.grannylunatic (AT) yahoo (DOT) com Pinpoint customers who are looking for what you sell. Need a brain boost? Recharge with a stimulating game. Play now! Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool. Shape Yahoo! in your own image. Join our Network Research Panel today! Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. Be a better Heartthrob. Get better relationship answers from someone who knows.Yahoo! Answers - Check it out. See what you’re getting into…before you go there

Shape Yahoo! in your own image. Join our Network Research Panel today!

July 23, 2007

HI

Thanks for coming aboard, so very, very sorry you needed too.

As for a cure for sarcoidosis, so far the best resource I've found studying sarc is the Foundation for Sarcoidosis Research. It is at www.stopsarcoidosis.org and is part of Dr. Baughmann and Dr. Om Sharma's study. These two MD's are the top of the pile in their research and treatment of sarcoidosis.

It amazes me that with you having cardiac sarcoidoisis that your MD's are still having you on prednisone, instead of the other immunosuppressants.

Generally, it takes a combination to get us under control, and yeah, pred is a starting place, but take it away, and you have systemic sarc on your hands. Once we need something more than the pred, there is the Imuran, Methotrexate, Cytoxan, Plaquenil, Arava, Remicade, Enbrel, Humira and Cellcept.

Naturally they all come with their own set of issues, but they can give you some quality of life back.

In our ARCHIVES and LINKS we have a huge number of articles, that you can print out and take the MD with you. Put your chair in front of the door, and go over them with the MD. Or take a friend, (blocker) with you so that they can't get out.

The info is out there on some more advanced treatment for us, and the MD's are still sitting on the prednisone fence. It's time for them to toss out the 1953 Merck manual that says this is a benign disease. It may be for some, but for the 20% of us that it's not. It's serious business.

take care, know you are at a place where we are fighting to get better, and we have a lot to share with each other. Hugs, holding hands and hearts, laughter and the tears.

Take care,

Tracie

NS Co-owner/moderatorGet a sneak peek of the all-new AOL.com.

July 24, 2007

I am also on methotrexate, but that was the first drug they put me on when the joints showed involvement. A short course of high dose prednisone was given then for three day, with good results. But it was not known that I had cardiac and neurologic involvement at that time, even though I had been on the methotrexate for about 6 months. I have another heart MRI next Monday to see if there is any improvement, Thank you, tiodaat@... wrote: HI Thanks for coming aboard, so very, very sorry you needed too. As for a cure for sarcoidosis, so far the best resource I've found studying sarc is the Foundation for Sarcoidosis Research. It is at www.stopsarcoidosis.org and is part of Dr. Baughmann and Dr. Om Sharma's study. These two MD's are the top of the pile in their research and treatment of sarcoidosis. It amazes me that with you having cardiac sarcoidoisis that your MD's are still having you on prednisone, instead of the other immunosuppressants. Generally, it takes a combination to get us under control, and yeah, pred is a starting place, but take it away, and you have systemic sarc on your hands. Once we need something more than the pred,

there is the Imuran, Methotrexate, Cytoxan, Plaquenil, Arava, Remicade, Enbrel, Humira and Cellcept. Naturally they all come with their own set of issues, but they can give you some quality of life back. In our ARCHIVES and LINKS we have a huge number of articles, that you can print out and take the MD with you. Put your chair in front of the door, and go over them with the MD. Or take a friend, (blocker) with you so that they can't get out. The info is out there on some more advanced treatment for us, and the MD's are still sitting on the prednisone fence. It's time for them to toss out the 1953 Merck manual that says this is a benign disease. It may be for some, but for the 20% of us that it's not. It's serious business. take care, know you are at a place where we

are fighting to get better, and we have a lot to share with each other. Hugs, holding hands and hearts, laughter and the tears. Take care, Tracie NS Co-owner/moderator Get a sneak peek of the all-new AOL.com.

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