chest & back pain

[Guest guest]

Has anyone had chest and back pain? I was bothered yestarday with very shartp,

throbbing

pain that started in my chest, then in my back and would radiate down from

there.

[Guest guest]

This could be anything from muscle spasms to plurisy to kidney infection to heart issues.

I have chest pain in the form of severe lymphopathy from the sarcoidosis. also, where the lungs attach to the spinal column, I get some awesome inflammation going on there also.

If you have cardiac involvement, I'd get it checked out if it continues.

Take care,

Tracie

NS Co-owner/moderator

[Guest guest]

, I have chest wall pain, which is more of an aching, but

sometimes its as severe as a bad tooth ache.. Then when I was first

getting sick, I was walking across a running track at a high school

here to watch my son play Jr Pro Football, I knew I wasn't feeling

well but I had no clue what was about to happen.. as I began walking

I got a sharp and I mean sharp pain in my lower back, it then began

to pulsate, my energy level was cut immediately in half and I wasn't

sure I was gonna make it to the other side of the field. I slowed

my pace down, and when I got to a place where it was acceptable to

sit down, I did and I didn't move for the rest of the game. It

scared the pants off me.. I was an old Emergency Room nurse and all

I could imagine with the pain being so severe was that I had an

aynuresum that was leaking.. I was fine the next day, I did tell my

son what happened just so he'd know I was really feeling sick.. We

went home went to bed and I was better the next day... a few days

later I went to the Red Cross to give blood my Hematocrit and

Hemagloblin was too low to give.. I don't have an answer as to what

happened, and now the doctors just look at me like I'm nuts if I

mention it.. However, if your having pain in your neck, chin or down

your arms you need to head to the nearest Emeregency Room..I don't

know like I said if its sarc related but there's nothing in the

books that says we can't have a heart attack as well as having sarc.

Hugs,

>

> Has anyone had chest and back pain? I was bothered yestarday with

very shartp, throbbing

> pain that started in my chest, then in my back and would radiate

down from there.

>

[Guest guest]

I spoke to my internist on the phone, who happens to specialize in cardiac

conditions. She

doubted, by the location and type of pain, that it was heart related, but wanted

me to go

to the ER next time it happened. She thought it would be helpful to " see it in

action. " She

said it sounded like some sort of spasm, which is what had occurred to me. How

sarc

could cause that? At any rate, I still have residual pain so I will try to be

seen by my regular

doctor. I tried some caffeinated beverages this week, which I don't usually

drink, due to

stomach and blood pressure issues. But I was so tired... probably the cause of

all this.

-

> >

> > Has anyone had chest and back pain? I was bothered yestarday with

> very shartp, throbbing

> > pain that started in my chest, then in my back and would radiate

> down from there.

> >

>

[Guest guest]

She

doubted, by the location and type of pain, that it was heart related, but wanted me to go

to the ER next time it happened. She thought it would be helpful to "see it in action." She aid it sounded like some sort of spasm, which is what had occurred to me. How sarc could cause that? At any rate, I still have residual pain so I will try to be seen by my regular doctor.

Sarcoidosis loves muscles and ligaments. In fact, many are diagnosed by muscle biopsies. (What the MD needs to do is find that "knot" that they've been calling fibromyalgia and get the biopsy there.)

Sarcoidosis hardens the muscles--and like with MS, we get the demylination (the myelin sheath covers the muscles and spinal cord) so demylination is a 'hole' that develops in this sheath. For most of us, it happens at the end of the muscles and nerves-- and works up to the spine-- vs. MS where it starts at the brain stem and works down the spine.

Have you noticed that when you exercise, your muscles seem more rigid-- not 'pumped up'- but rigid-- afterwards. This is from the lactic acid buildup in the muscle tissue-- and we don't clear it correctly.

Also, if this episode of chest and back pain happened after you started with the caffeine drinks- and wasn't a problem before- cut the caffeine back out. (You may want to try a bit of Ginsing instead). Or just really focus on getting enough fluids down-- primarily water, as dehydration will wear you out faster than anything else.

Also, dehydration causes an electrolyte imbalance, which will make your muscles spasm. We walk such a fine line-- with all this stuff, that any disruption causes us serious problems.

Hope this helps,

Tracie

NS co-owner/moderator

[Guest guest]

, I have pain such as you describe. The first time I experienced it I thought I was having a heart attack. The pain was in the middle to the left of my chest, in the epigastric area. It went down my left arm and up into my jaw. My teeth hurt. I took an aspirin and called the doctor. Went to the ER and they determined that I was not having an MI. My doctor did extensive testing for any heart problems and it was all negative. I have had the pain several times since and he has continued to do more and more high tech testing. It always shows nothing except I have a little cardiomyopathy which he attributes to the Sarcoid but that hasn't worsened. Now when I have the pain I realize that it is probably originating in the back and hurting through to the front of the chest. (they didn't check the spine) I take something, (Why hurt, I have had a lot of pain and noone has ever given me a medal for the

suffering) stop whatever I am doing and rest. It usually goes away in about 45 minutes to an hour. Then I just feel drained for a day. One thing we must be careful about. It could be cardiac related today even if it wasn't yesterday so don't ever take it lightly. Always be careful. Barb J.wendy_cidp wrote: Has anyone had chest and back pain? I was bothered yestarday with very shartp, throbbing pain that started in my chest, then in my back and would radiate down from there.~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PSTOPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PSTSUNDAY 4PM EST. 3PM CENTRAL. 1PM PSTCHATROOM

LINK: http://www.emxpc.net/chat/index.php Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Barb,Cardiomyopathy (mine is slight) is one of the symptoms of sarcoid cardiac involvement. Be really careful with that. The dr at s Hopkins is the one that told me an AICD was important if the heart was involved (and mine is) b/c of sudden cardiac death. I wore a 30 day event monitor that showed abnormal beats plus a cardiac stress test showed a "patchy uptake" during rest and exercise (my local cardiologist had told me the test was "normal" and it was NOT) which was clinically significant for cardiac sarcoid. Thank God I went to s Hopkins. Scary stuff for sure. I do have upper back pain and some chest pain as well.Best to all,Becky"barb J." wrote: , I have pain such as you describe. The first time I experienced it I thought I was having a heart attack. The pain was in the middle to the left of my chest, in the epigastric area. It went down my left arm and up into my jaw. My teeth hurt. I took an aspirin and called the doctor. Went to the ER and they determined that I was not having an MI. My doctor did extensive testing for any heart problems and it was all negative. I have had the pain several times since and he has continued to do more and more high tech testing. It always shows nothing except I have a little cardiomyopathy which he attributes to the Sarcoid but that hasn't worsened. Now when I have the pain I realize that it is probably originating in the back and hurting through

to the front of the chest. (they didn't check the spine) I take something, (Why hurt, I have had a lot of pain and noone has ever given me a medal for the suffering) stop whatever I am doing and rest. It usually goes away in about 45 minutes to an hour. Then I just feel drained for a day. One thing we must be careful about. It could be cardiac related today even if it wasn't yesterday so don't ever take it lightly. Always be careful. Barb J.wendy_cidp <wendy_cidp (AT) yahoo (DOT) ca> wrote: Has anyone had chest and back pain? I was bothered yestarday with very shartp, throbbing pain that started in my chest, then in my back and would radiate down from there.~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 12

MIDNIGHT EST. 11PM CENTRAL. 9PM PSTOPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PSTSUNDAY 4PM EST. 3PM CENTRAL. 1PM PSTCHATROOM LINK: http://www.emxpc.net/chat/index.php Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Becky,

My doctor is trying to find the closest Sarcoid clinic or at least a Sarc Specialist. I find it strange that there isn't one in Chicago. (There are Pulmonologists for those with pulmonary sarcoidosis but not one for neurosarcoid) I don't have much of a pulmonary component. My insurance won't pay for me to go to Indiana. I may have to go on my own.

I would love to go to s Hopkins.

Barb

Re: chest & back painBarb,Cardiomyopathy (mine is slight) is one of the symptoms of sarcoid cardiac involvement. Be really careful with that. The dr at s Hopkins is the one that told me an AICD was important if the heart was involved (and mine is) b/c of sudden cardiac death. I wore a 30 day event monitor that showed abnormal beats plus a cardiac stress test showed a "patchy uptake" during rest and exercise (my local cardiologist had told me the test was "normal" and it was NOT) which was clinically significant for cardiac sarcoid. Thank God I went to s Hopkins. Scary stuff for sure. I do have upper

back pain and some chest pain as well.Best to all,Becky"barb J." wrote:

,

I have pain such as you describe. The first time I experienced it I thought I was having a heart attack. The pain was in the middle to the left of my chest, in the epigastric area. It went down my left arm and up into my jaw. My teeth hurt. I took an aspirin and called the doctor. Went to the ER and they determined that I was not having an MI. My doctor did extensive testing for any heart problems and it was all negative. I have had the pain several times since and he has continued to do more and more high tech testing. It always shows nothing except I have a little cardiomyopathy which he attributes to the Sarcoid but that hasn't worsened.

Now when I have the pain I realize that it is probably originating in the back and hurting through to the front of the chest. (they didn't check the spine) I take something, (Why hurt, I have had a lot of pain and noone has ever given me a medal for the suffering) stop whatever I am doing and rest. It usually goes away in about 45 minutes to an hour. Then I just feel drained for a day.

One thing we must be careful about. It could be cardiac related today even if it wasn't yesterday so don't ever take it lightly. Always be careful.

Barb J.wendy_cidp <wendy_cidp (AT) yahoo (DOT) ca> wrote:

Has anyone had chest and back pain? I was bothered yestarday with very shartp, throbbing pain that started in my chest, then in my back and would radiate down from there.~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PSTOPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PSTSUNDAY 4PM EST. 3PM CENTRAL. 1PM PSTCHATROOM LINK: http://www.emxpc. net/chat/ index.php Message Archives:-http://groups. yahoo.com/ group/Neurosarco idosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups. yahoo.com/ group/Neurosarco idosis/database

[Guest guest]

Hi Barb,I've heard good things about "The Cleveland Clinic". If you go online you can google their site and find out info regarding them. s Hopkins is absolutely wonderful and is in Baltimore, MD. I live in Florida so is a bit of a distance for me also. My physician at JH is a pulmonologist at their sarcoid clinic but there are sarcoid specialists in major medical centers...just would need a referral to them. With JH I was told that my local physician would need to send them my referral paperwork (including all pertinent clinical notes) and they would decide if they would take on my case. I was fortunate (if you can call being sick fortunate!). They agreed and I had an appt approx four months later. Even though my JH dr is a pulmonologist, he is essentially treating all the other sarcoid stuff with the meds he gives me b/c they hopefully will work on the whole body. Unfortunately, since we don't know where or how we became sick with sarcoid, there is much difficulty

with treatment. Pulmonologists tend to run the sarcoid show since most people with the disease who have problems have lung issues (along with other sarcoid problems). But there are rheumatologists and other drs I'm sure who specialize in sarcoid. Initially, the lung symptoms were my main concern and that is why I chose JH (along with their exemplary reputation...have had a sarcoid clinic that was started by Dr. Carol s-pulmonologist- back in the 1950's). They also have an online site that you can access for info. I'm fortunate that my insurance pays for this care.Best to all,Becky"barb J." wrote: Becky, My doctor is trying to find the closest Sarcoid clinic or at least a Sarc Specialist. I find it strange that there isn't one in Chicago. (There are Pulmonologists for those with pulmonary sarcoidosis but not one for neurosarcoid) I don't have much of a pulmonary component. My insurance won't pay for me to go to Indiana. I may have to go on my own. I would love to go to s Hopkins. Barb Re: chest & back painBarb,Cardiomyopathy (mine is slight) is one of the symptoms of sarcoid cardiac involvement. Be really careful with that. The dr at s Hopkins is the one that told me an AICD was important if the heart was involved (and mine is) b/c of sudden cardiac death. I wore a 30 day event monitor that showed abnormal beats plus a cardiac stress test showed a "patchy uptake" during rest and exercise (my local cardiologist had told me the test was "normal" and it was NOT) which was clinically significant for cardiac sarcoid. Thank God I went to s Hopkins. Scary stuff for sure. I do have upper back pain and some chest pain as well.Best to

all,Becky"barb J." <statpdq (AT) yahoo (DOT) com> wrote: , I have pain such as you describe. The first time I experienced it I thought I was having a heart attack. The pain was in the middle to the left of my chest, in the epigastric area. It went down my left arm and up into my jaw. My teeth hurt. I took an aspirin and called the doctor. Went to the ER and they determined that I was not having an MI. My doctor did extensive testing for any heart problems and it was all negative. I have had the pain several times since and he has continued to do more and more high tech testing. It always shows nothing except I have a little cardiomyopathy which he attributes to the Sarcoid but that hasn't worsened. Now when I have the pain I realize that it is probably originating in the back

and hurting through to the front of the chest. (they didn't check the spine) I take something, (Why hurt, I have had a lot of pain and noone has ever given me a medal for the suffering) stop whatever I am doing and rest. It usually goes away in about 45 minutes to an hour. Then I just feel drained for a day. One thing we must be careful about. It could be cardiac related today even if it wasn't yesterday so don't ever take it lightly. Always be careful. Barb J.wendy_cidp <wendy_cidp (AT) yahoo (DOT) ca> wrote: Has anyone had chest and back pain? I was bothered yestarday with very shartp, throbbing pain that started in my chest, then in my back and would radiate down from there.~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST

SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PSTOPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PSTSUNDAY 4PM EST. 3PM CENTRAL. 1PM PSTCHATROOM LINK: http://www.emxpc. net/chat/ index.php Message Archives:-http://groups. yahoo.com/ group/Neurosarco idosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups. yahoo.com/ group/Neurosarco idosis/database

[Guest guest]

Hi all. Thanks for your replies. I stopped eating tomatoes ( I love summer

tomatoes),

drinking orange juice and basically anything acidy or caffeinated. The problem

went away.

My internist said I probably was having spasms in my esophagus from the excess

acid (I

do have an acid reflux problem - 2 nexiums a day). I'm feeling OK now, just

residual

aching. So far no problems of the heart. I just got back from a 3 day gallium

scan

procedure. I wonder how much it will reveal, if anything.

-

> Has anyone had chest and back pain? I was bothered yestarday with very

shartp,

throbbing

> pain that started in my chest, then in my back and would radiate down from

there.

>

>

>

>

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

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>

>

[Guest guest]

,Glad to hear you're better. Acid reflux can be horrendous. I take protonix for mine and it helps. Once I forgot to take it and by evening I was hurting like crazy. Best to all,Beckywendy_cidp wrote: Hi all. Thanks for your replies. I stopped eating tomatoes ( I love summer tomatoes), drinking orange juice and basically anything acidy or caffeinated. The problem went away. My internist said I probably was having spasms in my esophagus from the excess acid (I do have an acid reflux

problem - 2 nexiums a day). I'm feeling OK now, just residual aching. So far no problems of the heart. I just got back from a 3 day gallium scan procedure. I wonder how much it will reveal, if anything. - > Has anyone had chest and back pain? I was bothered yestarday with very shartp, throbbing > pain that started in my chest, then in my back and would radiate down from there. > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM CENTRAL. 6PM PST > SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST > OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST > SUNDAY 4PM EST. 3PM CENTRAL. 1PM PST > > CHATROOM LINK: http://www.emxpc. net/chat/ index.php > > Message Archives:- > http://groups. yahoo.com/ group/Neurosarco idosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups. yahoo.com/ group/Neurosarco idosis/database > >

[Guest guest]

Becky,

I haven't had access to the internet lately, so I am

late reading my emails. I live in Macclenny, Florida

- what part of the state are you located in if you

don't mind my asking.

Connie

--- Mac Tosh macandtosh626@...> wrote:

> Hi Barb,

> I've heard good things about " The Cleveland Clinic " .

> If you go online you can google their site and find

> out info regarding them. s Hopkins is absolutely

> wonderful and is in Baltimore, MD. I live in Florida

> so is a bit of a distance for me also. My physician

> at JH is a pulmonologist at their sarcoid clinic but

> there are sarcoid specialists in major medical

> centers...just would need a referral to them. With

> JH I was told that my local physician would need to

> send them my referral paperwork (including all

> pertinent clinical notes) and they would decide if

> they would take on my case. I was fortunate (if you

> can call being sick fortunate!). They agreed and I

> had an appt approx four months later. Even though my

> JH dr is a pulmonologist, he is essentially treating

> all the other sarcoid stuff with the meds he gives

> me b/c they hopefully will work on the whole body.

> Unfortunately, since we don't know where or how we

> became sick with sarcoid, there is much difficulty

> with

> treatment. Pulmonologists tend to run the sarcoid

> show since most people with the disease who have

> problems have lung issues (along with other sarcoid

> problems). But there are rheumatologists and other

> drs I'm sure who specialize in sarcoid. Initially,

> the lung symptoms were my main concern and that is

> why I chose JH (along with their exemplary

> reputation...have had a sarcoid clinic that was

> started by Dr. Carol s-pulmonologist- back in

> the 1950's). They also have an online site that you

> can access for info. I'm fortunate that my insurance

> pays for this care.

> Best to all,

> Becky

>

> " barb J. " statpdq@...> wrote:

>

> Becky,

> My doctor is trying to find the closest Sarcoid

> clinic or at least a Sarc Specialist. I find it

> strange that there isn't one in Chicago. (There are

> Pulmonologists for those with pulmonary sarcoidosis

> but not one for neurosarcoid) I don't have much of a

> pulmonary component. My insurance won't pay for me

> to go to Indiana. I may have to go on my own.

> I would love to go to s Hopkins.

> Barb

>

>

> Re: chest & back pain

>

> Barb,

> Cardiomyopathy (mine is slight) is one of the

> symptoms of sarcoid cardiac involvement. Be really

> careful with that. The dr at s Hopkins is the

> one that told me an AICD was important if the heart

> was involved (and mine is) b/c of sudden cardiac

> death. I wore a 30 day event monitor that showed

> abnormal beats plus a cardiac stress test showed a

> " patchy uptake " during rest and exercise (my local

> cardiologist had told me the test was " normal " and

> it was NOT) which was clinically significant for

> cardiac sarcoid. Thank God I went to s Hopkins.

> Scary stuff for sure. I do have upper back pain and

> some chest pain as well.

> Best to all,

> Becky

>

> " barb J. " statpdq@...> wrote:

> ,

> I have pain such as you describe. The first time I

> experienced it I thought I was having a heart

> attack. The pain was in the middle to the left of my

> chest, in the epigastric area. It went down my left

> arm and up into my jaw. My teeth hurt. I took an

> aspirin and called the doctor. Went to the ER and

> they determined that I was not having an MI. My

> doctor did extensive testing for any heart problems

> and it was all negative. I have had the pain several

> times since and he has continued to do more and

> more high tech testing. It always shows nothing

> except I have a little cardiomyopathy which he

> attributes to the Sarcoid but that hasn't worsened.

> Now when I have the pain I realize that it is

> probably originating in the back and hurting through

> to the front of the chest. (they didn't check the

> spine) I take something, (Why hurt, I have had a lot

> of pain and noone has ever given me a medal for the

> suffering) stop whatever I am doing and rest. It

> usually goes away in about 45 minutes to an hour.

> Then I just feel drained for a day.

> One thing we must be careful about. It could be

> cardiac related today even if it wasn't yesterday so

> don't ever take it lightly. Always be careful.

> Barb J.

> wendy_cidp wrote:

> Has anyone had chest and back pain? I was bothered

> yestarday with very shartp, throbbing

> pain that started in my chest, then in my back and

> would radiate down from there.

>

>

>

>

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> NS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM

> CENTRAL. 6PM PST

> SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST

> OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST

> SUNDAY 4PM EST. 3PM CENTRAL. 1PM PST

>

> CHATROOM LINK: http://www.emxpc. net/chat/ index.php

>

>

> Message Archives:-

> http://groups. yahoo.com/ group/Neurosarco

> idosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant

> messengers.

> http://groups. yahoo.com/ group/Neurosarco

> idosis/database

>

>

[Guest guest]

Hi Connie,I live in Valrico. It's right outside of Tampa. Blessings,BeckyConnie Griffis wrote: Becky, I haven't had access to the internet lately, so I am late reading my emails. I live in Macclenny, Florida - what part of the state are you located in if you don't mind my asking. Connie --- Mac Tosh <macandtosh626 (AT) yahoo (DOT) com> wrote: > Hi Barb, > I've heard good things about "The

Cleveland Clinic". > If you go online you can google their site and find > out info regarding them. s Hopkins is absolutely > wonderful and is in Baltimore, MD. I live in Florida > so is a bit of a distance for me also. My physician > at JH is a pulmonologist at their sarcoid clinic but > there are sarcoid specialists in major medical > centers...just would need a referral to them. With > JH I was told that my local physician would need to > send them my referral paperwork (including all > pertinent clinical notes) and they would decide if > they would take on my case. I was fortunate (if you > can call being sick fortunate!). They agreed and I > had an appt approx four months later. Even though my > JH dr is a pulmonologist, he is essentially treating > all the other sarcoid stuff with the meds he gives > me b/c they hopefully will work on the whole

body. > Unfortunately, since we don't know where or how we > became sick with sarcoid, there is much difficulty > with > treatment. Pulmonologists tend to run the sarcoid > show since most people with the disease who have > problems have lung issues (along with other sarcoid > problems). But there are rheumatologists and other > drs I'm sure who specialize in sarcoid. Initially, > the lung symptoms were my main concern and that is > why I chose JH (along with their exemplary > reputation...have had a sarcoid clinic that was > started by Dr. Carol s-pulmonologist- back in > the 1950's). They also have an online site that you > can access for info. I'm fortunate that my insurance > pays for this care. > Best to all, > Becky > > "barb J." <statpdq (AT) yahoo (DOT) com> wrote: > > Becky, > My doctor is trying to find the closest Sarcoid > clinic or at least a Sarc Specialist. I find it > strange that there isn't one in Chicago. (There are > Pulmonologists for those with pulmonary sarcoidosis > but not one for neurosarcoid) I don't have much of a > pulmonary component. My insurance won't pay for me > to go to Indiana. I may have to go on my own. > I would love to go to s Hopkins. > Barb > > > Re: chest & back pain > > Barb, > Cardiomyopathy (mine is slight) is

one of the > symptoms of sarcoid cardiac involvement. Be really > careful with that. The dr at s Hopkins is the > one that told me an AICD was important if the heart > was involved (and mine is) b/c of sudden cardiac > death. I wore a 30 day event monitor that showed > abnormal beats plus a cardiac stress test showed a > "patchy uptake" during rest and exercise (my local > cardiologist had told me the test was "normal" and > it was NOT) which was clinically significant for > cardiac sarcoid. Thank God I went to s Hopkins. > Scary stuff for sure. I do have upper back pain and > some chest pain as well. > Best to all, > Becky > > "barb J." <statpdq (AT) yahoo (DOT) com> wrote: > , > I have pain such as you describe. The first time I > experienced it I thought I was having a heart

> attack. The pain was in the middle to the left of my > chest, in the epigastric area. It went down my left > arm and up into my jaw. My teeth hurt. I took an > aspirin and called the doctor. Went to the ER and > they determined that I was not having an MI. My > doctor did extensive testing for any heart problems > and it was all negative. I have had the pain several > times since and he has continued to do more and > more high tech testing. It always shows nothing > except I have a little cardiomyopathy which he > attributes to the Sarcoid but that hasn't worsened. > Now when I have the pain I realize that it is > probably originating in the back and hurting through > to the front of the chest. (they didn't check the > spine) I take something, (Why hurt, I have had a lot > of pain and noone has ever given me a medal for the > suffering) stop whatever I am

doing and rest. It > usually goes away in about 45 minutes to an hour. > Then I just feel drained for a day. > One thing we must be careful about. It could be > cardiac related today even if it wasn't yesterday so > don't ever take it lightly. Always be careful. > Barb J. > wendy_cidp <wendy_cidp (AT) yahoo (DOT) ca> wrote: > Has anyone had chest and back pain? I was bothered > yestarday with very shartp, throbbing > pain that started in my chest, then in my back and > would radiate down from there. > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM > CENTRAL. 6PM PST > SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST > OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST > SUNDAY 4PM EST. 3PM CENTRAL. 1PM PST >

> CHATROOM LINK: http://www.emxpc. net/chat/ index.php > > > Message Archives:- > http://groups. yahoo.com/ group/Neurosarco > idosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant > messengers. > http://groups. yahoo.com/ group/Neurosarco > idosis/database > >

[Guest guest]

,

I know doctor's shy away from prescribing it because

it is a little pricey, but the only thing that gives

me relief from my reflux & keeps it straight is

Prevacid. I tried nexium & prilosec and I might as

well have not even bothered to take it.

I only have to take one prevacid a day for it to

control, & in the past before I took it regularly it

cleared up what I know was an ulcer in my esophagus in

nothing flat.

Might be worth asking about, my gastroenterologist

wrote a letter to my insurance company so they would

pay for it because nexium doesn't work.\

Just a thought.....Connie

--- wendy_cidp wendy_cidp@...> wrote:

> Hi all. Thanks for your replies. I stopped eating

> tomatoes ( I love summer tomatoes),

> drinking orange juice and basically anything acidy

> or caffeinated. The problem went away.

> My internist said I probably was having spasms in my

> esophagus from the excess acid (I

> do have an acid reflux problem - 2 nexiums a day).

> I'm feeling OK now, just residual

> aching. So far no problems of the heart. I just got

> back from a 3 day gallium scan

> procedure. I wonder how much it will reveal, if

> anything.

> -

>

>

> > Has anyone had chest and back pain? I was

> bothered yestarday with very shartp,

> throbbing

> > pain that started in my chest, then in my back and

> would radiate down from there.

> >

> >

> >

> >

> >

> >

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > The Neurosarcoidosis Community

> >

> > NS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM

> CENTRAL. 6PM PST

> > SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST

> > OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST

> > SUNDAY 4PM EST. 3PM CENTRAL. 1PM PST

> >

> > CHATROOM LINK: http://www.emxpc. net/chat/

> index.php

> >

> > Message Archives:-

> > http://groups. yahoo.com/ group/Neurosarco

> idosis/messages

> >

> > Members Database:-

> > Listings of locations, phone numbers, and instant

> messengers.

> > http://groups. yahoo.com/ group/Neurosarco

> idosis/database

> >

> >

[Guest guest]

I have taken Protonix for a long time (after a GI bleed) and it works well for me. It is interesting how many of us have GI problems. Blessings,BeckyConnie Griffis wrote: , I know doctor's shy away from prescribing it because it is a little pricey, but the only thing that gives me relief from my reflux & keeps it straight is Prevacid. I tried nexium & prilosec and I might as well have not even bothered to take it. I only have to take one prevacid a day

for it to control, & in the past before I took it regularly it cleared up what I know was an ulcer in my esophagus in nothing flat. Might be worth asking about, my gastroenterologist wrote a letter to my insurance company so they would pay for it because nexium doesn't work.\ Just a thought.....Connie --- wendy_cidp <wendy_cidp (AT) yahoo (DOT) ca> wrote: > Hi all. Thanks for your replies. I stopped eating > tomatoes ( I love summer tomatoes), > drinking orange juice and basically anything acidy > or caffeinated. The problem went away. > My internist said I probably was having spasms in my > esophagus from the excess acid (I > do have an acid reflux problem - 2 nexiums a day). > I'm feeling OK now, just residual > aching. So far no problems of the heart. I just got > back from a 3 day gallium scan

> procedure. I wonder how much it will reveal, if > anything. > - > > > > Has anyone had chest and back pain? I was > bothered yestarday with very shartp, > throbbing

> > pain that started in my chest, then in my back and > would radiate down from there. > > > > > > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > NS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM > CENTRAL. 6PM PST > > SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST > > OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST > > SUNDAY 4PM EST. 3PM CENTRAL. 1PM PST > > > > CHATROOM LINK: http://www.emxpc. net/chat/ > index.php > > > > Message Archives:- > > http://groups. yahoo.com/ group/Neurosarco > idosis/messages > > > > Members Database:- > > Listings of locations, phone numbers, and instant > messengers. >

> http://groups. yahoo.com/ group/Neurosarco > idosis/database > > > >

[Guest guest]

Thanks Connie. I have taken nexium 2 times a day for years, so I was

surprised that the pain felt like acid reflux. I'll ask about the

Prevacid. I have a great insurance company that pays 100% without

question so that won't be an issue.

> > > Has anyone had chest and back pain? I was

> > bothered yestarday with very shartp,

> > throbbing

> > > pain that started in my chest, then in my back and

> > would radiate down from there.

> > >

> > >

> > >

> > >

> > >

> > >

> > > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > > The Neurosarcoidosis Community

> > >

> > > NS CHAT:- FAITH CHATS: WEDNESDAY 9PM EST. 8PM

> > CENTRAL. 6PM PST

> > > SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST

> > > OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST

> > > SUNDAY 4PM EST. 3PM CENTRAL. 1PM PST

> > >

> > > CHATROOM LINK: http://www.emxpc. net/chat/

> > index.php

> > >

> > > Message Archives:-

> > > http://groups. yahoo.com/ group/Neurosarco

> > idosis/messages

> > >

> > > Members Database:-

> > > Listings of locations, phone numbers, and instant

> > messengers.

> > > http://groups. yahoo.com/ group/Neurosarco

> > idosis/database

> > >

> > >

[Guest guest]

As usual running behind. I live in Macclenny Fl & Work in Orange Park. Macclenny is at the bottom of the dip in the top of fl near the coast....ConnieMac Tosh wrote: Hi Connie,I live in Valrico. It's right outside of Tampa. Blessings,BeckyConnie Griffis <conaugusta (AT) yahoo (DOT) com> wrote: Becky,I haven't had

access to the internet lately, so I amlate reading my emails. I live in Macclenny, Florida- what part of the state are you located in if youdon't mind my asking.Connie--- Mac Tosh <macandtosh626 (AT) yahoo (DOT) com> wrote:> Hi Barb,> I've heard good things about "The Cleveland Clinic".> If you go online you can google their site and find> out info regarding them. s Hopkins is absolutely> wonderful and is in Baltimore, MD. I live in Florida> so is a bit of a distance for me also. My physician> at JH is a pulmonologist at their sarcoid clinic but> there are sarcoid specialists in major medical> centers...just would need a referral to them. With> JH I was told that my local physician would need to> send them my referral paperwork (including all> pertinent clinical notes) and they would decide if> they

would take on my case. I was fortunate (if you> can call being sick fortunate!). They agreed and I> had an appt approx four months later. Even though my> JH dr is a pulmonologist, he is essentially treating> all the other sarcoid stuff with the meds he gives> me b/c they hopefully will work on the whole body.> Unfortunately, since we don't know where or how we> became sick with sarcoid, there is much difficulty> with> treatment. Pulmonologists tend to run the sarcoid> show since most people with the disease who have> problems have lung issues (along with other sarcoid> problems). But there are rheumatologists and other> drs I'm sure who specialize in sarcoid. Initially,> the lung symptoms were my main concern and that is> why I chose JH (along with their exemplary> reputation...have had a sarcoid clinic that was> started by Dr. Carol

s-pulmonologist- back in> the 1950's). They also have an online site that you> can access for info. I'm fortunate that my insurance> pays for this care.> Best to all,> Becky> > "barb J." <statpdq (AT) yahoo (DOT) com> wrote: > > Becky,> My doctor is trying to find the closest Sarcoid> clinic or at least a Sarc Specialist. I find it> strange that there isn't one in Chicago. (There are> Pulmonologists for those with pulmonary sarcoidosis> but not one for neurosarcoid) I don't have much of a> pulmonary component. My insurance won't pay for me> to go to Indiana. I may have to go on my own.> I would love to go to s Hopkins.> Barb> > > Re: chest & back pain> > Barb,> Cardiomyopathy (mine is slight) is one of the> symptoms of sarcoid cardiac involvement. Be really> careful with that. The dr at s Hopkins is the> one that told me an AICD was important if the heart> was involved (and mine is) b/c of sudden cardiac> death. I wore a 30 day event monitor that showed> abnormal beats plus a cardiac stress test showed a> "patchy uptake" during rest and exercise (my local> cardiologist had told me the test was "normal" and> it was NOT) which was clinically significant for> cardiac sarcoid. Thank God I went to s Hopkins.> Scary stuff for sure. I do have upper back pain and> some chest pain as well.> Best to

all,> Becky> > "barb J." <statpdq (AT) yahoo (DOT) com> wrote: > ,> I have pain such as you describe. The first time I> experienced it I thought I was having a heart> attack. The pain was in the middle to the left of my> chest, in the epigastric area. It went down my left> arm and up into my jaw. My teeth hurt. I took an> aspirin and called the doctor. Went to the ER and> they determined that I was not having an MI. My> doctor did extensive testing for any heart problems> and it was all negative. I have had the pain several> times since and he has continued to do more and> more high tech testing. It always shows nothing> except I have a little cardiomyopathy which he> attributes to the Sarcoid but that hasn't worsened. > Now when I have the pain I realize that it is> probably originating in the

back and hurting through> to the front of the chest. (they didn't check the> spine) I take something, (Why hurt, I have had a lot> of pain and noone has ever given me a medal for the> suffering) stop whatever I am doing and rest. It> usually goes away in about 45 minutes to an hour.> Then I just feel drained for a day.> One thing we must be careful about. It could be> cardiac related today even if it wasn't yesterday so> don't ever take it lightly. Always be careful.> Barb J.> wendy_cidp <wendy_cidp (AT) yahoo (DOT) ca> wrote:> Has anyone had chest and back pain? I was bothered> yestarday with very shartp, throbbing > pain that started in my chest, then in my back and> would radiate down from there.> > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > NS CHAT:- FAITH CHATS:

WEDNESDAY 9PM EST. 8PM> CENTRAL. 6PM PST > SUNDAY 12 MIDNIGHT EST. 11PM CENTRAL. 9PM PST> OPEN CHATS: THURSDAY 9PM EST. 8PM CENTRAL. 6PM PST> SUNDAY 4PM EST. 3PM CENTRAL. 1PM PST> > CHATROOM LINK: http://www.emxpc. net/chat/ index.php> > > Message Archives:-> http://groups. yahoo.com/ group/Neurosarco> idosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant> messengers.> http://groups. yahoo.com/ group/Neurosarco> idosis/database > >