Re: muscle spasm, specifically pelvic

[Guest guest]

That's interesting. I have spasms of my esophagus, colon, diaphragm, heart (?), abdominal and chest muscles. I'm on clonazepam, neurontin, calcium, and magnesium, specifically for spasms (and a whole bunch of other meds).

Blessings,

-- muscle spasm, specifically pelvic

I am wondering if anyone has any input regarding pelvic muscle spasm and subsequent anal fissures. I had surgery 3-03 and now have another fissure with an appt. tomorrow. I also have urethral spasm with recommendations to have a "pacemaker" placed on the nerve that controls the outlet of the bladder. Does anyone have any history of these problems and any recommendations?Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment.Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack.

[Guest guest]

I get internal myoclonus and neither of my neuros seemed surprised. I think

mine is the diaphragm, but it is hard to pin it down. The Lamictal I take

helps to decrease it.

laurie

>

> Reply-To:

> Date: Sun, 1 Feb 2004 18:50:03 -0800 (Pacific Standard Time)

> To: < >

> Subject: Re: muscle spasm, specifically pelvic

>

> That's interesting. I have spasms of my esophagus, colon, diaphragm, heart

> (?), abdominal and chest muscles. I'm on clonazepam, neurontin, calcium,

> and magnesium, specifically for spasms (and a whole bunch of other meds).

>

>

>

> Blessings,

>

>

>

>

>

> -- muscle spasm, specifically pelvic

>

>

>

> I am wondering if anyone has any input regarding pelvic muscle spasm

>

> and subsequent anal fissures. I had surgery 3-03 and now have

>

> another fissure with an appt. tomorrow. I also have urethral spasm

>

> with recommendations to have a " pacemaker " placed on the nerve that

>

> controls the outlet of the bladder. Does anyone have any history of

>

> these problems and any recommendations?

>

>

>

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail

> is entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with

> their physicians regarding changes in their own treatment.

>

>

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

>

>

>

>

[Guest guest]

I know another mito patient who is not part of this group who is

having a very difficult time with both pelvic spasms and anal

fissures. She is still searching for solutions.

Barbara

> That's interesting. I have spasms of my esophagus, colon,

diaphragm, heart

> (?), abdominal and chest muscles. I'm on clonazepam, neurontin,

calcium,

> and magnesium, specifically for spasms (and a whole bunch of other

meds).

>

> Blessings,

>

>

> -- muscle spasm, specifically pelvic

>

> I am wondering if anyone has any input regarding pelvic muscle

spasm

> and subsequent anal fissures. I had surgery 3-03 and now have

> another fissure with an appt. tomorrow. I also have urethral

spasm

> with recommendations to have a " pacemaker " placed on the nerve

that

> controls the outlet of the bladder. Does anyone have any history

of

> these problems and any recommendations?

>

>

>

>

> Medical advice, information, opinions, data and statements

contained herein

> are not necessarily those of the list moderators. The author of

this e mail

> is entirely responsible for its content. List members are reminded

of their

> responsibility to evaluate the content of the postings and consult

with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who

sends one is

> automatically moderated or removed depending on the severity of

the attack.

>

>

>

>

[Guest guest]

Hi Laurie and (yes I'm back finally got onto the yahoo site this

afternoon) I have a question relatet to this- does anyone else

experience a sort of tremulousness in their abdomens? I get this all the time

and it is most unnerving. I don't know if its from my

organs or the abdomenal musculature. Sometimes I think it accurs after eating,

sometimes after any activity. Sometime I can even

see my abdomenall wall quivering. Any ansers appreciated, And yes,m I do get

muscle spas,s in various places too. Celia

>

>

> I get internal myoclonus and neither of my neuros seemed surprised. I think

> mine is the diaphragm, but it is hard to pin it down. The Lamictal I take

> helps to decrease it.

>

> laurie

>

> > From: " Kaspick " <greytwhisperer@s...>

> > Reply-To:

> > Date: Sun, 1 Feb 2004 18:50:03 -0800 (Pacific Standard Time)

> > To: < >

> > Subject: Re: muscle spasm, specifically pelvic

> >

> > That's interesting. I have spasms of my esophagus, colon, diaphragm, heart

> > (?), abdominal and chest muscles. I'm on clonazepam, neurontin, calcium,

> > and magnesium, specifically for spasms (and a whole bunch of other meds).

> >

> >

> >

> > Blessings,

> >

> >

> >

> >

> >

> > -- muscle spasm, specifically pelvic

> >

> >

> >

> > I am wondering if anyone has any input regarding pelvic muscle spasm

> >

> > and subsequent anal fissures. I had surgery 3-03 and now have

> >

> > another fissure with an appt. tomorrow. I also have urethral spasm

> >

> > with recommendations to have a " pacemaker " placed on the nerve that

> >

> > controls the outlet of the bladder. Does anyone have any history of

> >

> > these problems and any recommendations?

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > Medical advice, information, opinions, data and statements contained herein

> > are not necessarily those of the list moderators. The author of this e mail

> > is entirely responsible for its content. List members are reminded of their

> > responsibility to evaluate the content of the postings and consult with

> > their physicians regarding changes in their own treatment.

> >

> >

> >

> > Personal attacks are not permitted on the list and anyone who sends one is

> > automatically moderated or removed depending on the severity of the attack.

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Celia

It sounds like tremors and myoclonus which is very common, especially if it

is worse when you are tired. It is a very weird feeling - kind of like an

eyelid tick inside the body.

laurie

>

> Reply-To:

> Date: Mon, 02 Feb 2004 21:56:16 -0000

> To:

> Subject: Re: muscle spasm, specifically pelvic

>

> Hi Laurie and (yes I'm back finally got onto the yahoo site this

> afternoon) I have a question relatet to this- does anyone else

> experience a sort of tremulousness in their abdomens? I get this all the time

> and it is most unnerving. I don't know if its from my

> organs or the abdomenal musculature. Sometimes I think it accurs after eating,

> sometimes after any activity. Sometime I can even

> see my abdomenall wall quivering. Any ansers appreciated, And yes,m I do get

> muscle spas,s in various places too. Celia

>

>

>>

>>

>> I get internal myoclonus and neither of my neuros seemed surprised. I think

>> mine is the diaphragm, but it is hard to pin it down. The Lamictal I take

>> helps to decrease it.

>>

>> laurie

>>

>>> From: " Kaspick " <greytwhisperer@s...>

>>> Reply-To:

>>> Date: Sun, 1 Feb 2004 18:50:03 -0800 (Pacific Standard Time)

>>> To: < >

>>> Subject: Re: muscle spasm, specifically pelvic

>>>

>>> That's interesting. I have spasms of my esophagus, colon, diaphragm, heart

>>> (?), abdominal and chest muscles. I'm on clonazepam, neurontin, calcium,

>>> and magnesium, specifically for spasms (and a whole bunch of other meds).

>>>

>>>

>>>

>>> Blessings,

>>>

>>>

>>>

>>>

>>>

>>> -- muscle spasm, specifically pelvic

>>>

>>>

>>>

>>> I am wondering if anyone has any input regarding pelvic muscle spasm

>>>

>>> and subsequent anal fissures. I had surgery 3-03 and now have

>>>

>>> another fissure with an appt. tomorrow. I also have urethral spasm

>>>

>>> with recommendations to have a " pacemaker " placed on the nerve that

>>>

>>> controls the outlet of the bladder. Does anyone have any history of

>>>

>>> these problems and any recommendations?

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>> Medical advice, information, opinions, data and statements contained herein

>>> are not necessarily those of the list moderators. The author of this e mail

>>> is entirely responsible for its content. List members are reminded of their

>>> responsibility to evaluate the content of the postings and consult with

>>> their physicians regarding changes in their own treatment.

>>>

>>>

>>>

>>> Personal attacks are not permitted on the list and anyone who sends one is

>>> automatically moderated or removed depending on the severity of the attack.

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>>

[Guest guest]

Hi Celia,

Sometimes my abdomen looks like it's having its own personal earthquake. In me, it is usually a prelude to an enormous abdominal spasm. But, not always. It looks funny, like I have an Alien going to come out..

Blessings,

-- muscle spasm, specifically pelvic> > > > > > > > I am wondering if anyone has any input regarding pelvic muscle spasm> > > > and subsequent anal fissures. I had surgery 3-03 and now have> > > > another fissure with an appt. tomorrow. I also have urethral spasm> > > > with recommendations to have a "pacemaker" placed on the nerve that> > > > controls the outlet of the bladder. Does anyone have any history of> > > > these problems and any recommendations?> > > > > > > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein> > are not necessarily those of the list moderators. The author of this e mail> > is entirely responsible for its content. List members are reminded of their> > responsibility to evaluate the content of the postings and consult with> > their physicians regarding changes in their own treatment.> > > > > > > > Personal attacks are not permitted on the list and anyone who sends one is> > automatically moderated or removed depending on the severity of the attack.> > > > > > > > > > > > > > > >

[Guest guest]

Laurie,

I saw a Dr. Layzer, at U.C. San Francisco. He is a neurologist that writes textbooks, on just spasms, and he said that he has never seen spasms like the ones that I have. Although, I was diagnosed with myoclonus, it is not a myoclonus. My spasms last too long to be myoclonus. I hate it when a doctor says that I'm holding my breath. I'm not holding my breath. I can't breathe because my diaphragm is in a spasm. Not fun!

Blessings,

-- muscle spasm, specifically pelvic> > > > I am wondering if anyone has any input regarding pelvic muscle spasm> > and subsequent anal fissures. I had surgery 3-03 and now have> > another fissure with an appt. tomorrow. I also have urethral spasm> > with recommendations to have a "pacemaker" placed on the nerve that> > controls the outlet of the bladder. Does anyone have any history of> > these problems and any recommendations?> > > > > > > > > > Medical advice, information, opinions, data and statements contained herein> are not necessarily those of the list moderators. The author of this e mail> is entirely responsible for its content. List members are reminded of their> responsibility to evaluate the content of the postings and consult with> their physicians regarding changes in their own treatment.> > > > Personal attacks are not permitted on the list and anyone who sends one is> automatically moderated or removed depending on the severity of the attack.> > > > > > > >

[Guest guest]

Laurie,

The only pulmonary doctor that I've seen was in 1975, with spasms of my chest muscles. He said that he thought they were cramps. Wow, I didn't know that! *sarcastic*

-- muscle spasm, specifically pelvic> >> > >> > >> > >> I am wondering if anyone has any input regarding pelvic muscle spasm> >> > >> and subsequent anal fissures. I had surgery 3-03 and now have> >> > >> another fissure with an appt. tomorrow. I also have urethral spasm> >> > >> with recommendations to have a "pacemaker" placed on the nerve that> >> > >> controls the outlet of the bladder. Does anyone have any history of> >> > >> these problems and any recommendations?> >> > >> > >> > >> > >> > >> > >> > >> > >> > >> Medical advice, information, opinions, data and statements contained> herein> >> are not necessarily those of the list moderators. The author of this e> mail> >> is entirely responsible for its content. List members are reminded of> their> >> responsibility to evaluate the content of the postings and consult with> >> their physicians regarding changes in their own treatment.> >> > >> > >> > >> Personal attacks are not permitted on the list and anyone who sends one is> >> automatically moderated or removed depending on the severity of the attack> > >> > >> > >> > >> > >> > >> > >> > >>

[Guest guest]

That definitely sounds terrible. Have you seen a pulmonary doctor? Just

thinking out loud on that one.

laurie

>

> Reply-To:

> Date: Mon, 2 Feb 2004 21:05:42 -0800 (Pacific Standard Time)

> To: < >

> Subject: Re: muscle spasm, specifically pelvic

>

> Laurie,

>

>

>

> I saw a Dr. Layzer, at U.C. San Francisco. He is a neurologist that

> writes textbooks, on just spasms, and he said that he has never seen spasms

> like the ones that I have. Although, I was diagnosed with myoclonus, it is

> not a myoclonus. My spasms last too long to be myoclonus. I hate it when a

> doctor says that I'm holding my breath. I'm not holding my breath. I can't

> breathe because my diaphragm is in a spasm. Not fun!

>

>

>

> Blessings,

>

>

>

>

>

> -- muscle spasm, specifically pelvic

>

>>

>

>>

>

>>

>

>> I am wondering if anyone has any input regarding pelvic muscle spasm

>

>>

>

>> and subsequent anal fissures. I had surgery 3-03 and now have

>

>>

>

>> another fissure with an appt. tomorrow. I also have urethral spasm

>

>>

>

>> with recommendations to have a " pacemaker " placed on the nerve that

>

>>

>

>> controls the outlet of the bladder. Does anyone have any history of

>

>>

>

>> these problems and any recommendations?

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

>

>> Medical advice, information, opinions, data and statements contained

> herein

>

>> are not necessarily those of the list moderators. The author of this e

> mail

>

>> is entirely responsible for its content. List members are reminded of

> their

>

>> responsibility to evaluate the content of the postings and consult with

>

>> their physicians regarding changes in their own treatment.

>

>>

>

>>

>

>>

>

>> Personal attacks are not permitted on the list and anyone who sends one is

>

>> automatically moderated or removed depending on the severity of the attack

>

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

>

>>

[Guest guest]

,

I hope they are able to do something about these. They sound terribly uncomfortable and scary.

Alice

----- Original Message -----

From: Kaspick

Although, I was diagnosed with myoclonus, it is not a myoclonus. My spasms last too long to be myoclonus. I hate it when a doctor says that I'm holding my breath. I'm not holding my breath. I can't breathe because my diaphragm is in a spasm. Not fun!

Blessings,

[Guest guest]

experience a sort of tremulousness in their abdomens?

I love that term.....I have been referring to the feeling as "my little internal Irish Jig"

I can be sitting and all of a sudden, on the right side, it feels like when I was pregnant and the baby would go crazy with the kicking/fluttering. You can actually see the muscles on the entire right side of my abdomen start rippling! Of course, shortly thereafter, I know that I had better be locating a toilet...The spasms begin in my esophogus as soon as I eat something...I have difficulty swallowing, then after I do get things down, my entire digestive system goes into super-overdrive and within 10 minutes I am having colonic spasms.

Needless to say, I eat little and rarely. I also plan my eating based on when I will be able to get to a bathroom.

-Swim lady

[Guest guest]

, it's so common for people to have GI problems related to

Mito. Not eating isn't the solution. You really need to see a GI

doc so they can figure out what is going on...soon ! There are many

medications you can take to improve GI symptoms. It might also

require that you modify your diet. I have an extremely strict diet

and medications. If you're having swallowing problems this can put

you at risk for aspiration into your lungs. The bowel problems

could potentially cause a pseudo-obstruction or perforation as

well. All serious issues.

I eat solely for nutrition and not pleasure. You may not be willing

to make this sacrifice but for me it's a life or death choice. This

means preparing all meals at home and avoiding things that are hard

to swallow. I also drink water exclusively. It's likely that

dietary changes can make a huge difference for you. Your GI doc can

make suggestions and possibly a nutritionist. You could also be

sent to a speech pathologist for swallowing techniques. Most GI

docs have you do quite a few tests to determine what the problem(s)

is. Several are invasive so you'll have to decide if your issues

are severe enough. Sounds like they are though.

Good luck,

bug

[Guest guest]

Swallowing problems have been with me for about 4 years...video swallow tests, barium tests, endoscopy. GERD with acid reflux so severe that the aspirated acid has scarred the trachea. Previcid twice a day....possibly caused the diarrhea..reduced to once a day. Numerous stool samples for many different tests.Stopped all supplements, then re-introduced them....no change. Stopped/reduced/weaned off all meds and then re-introduced....no change.

Dietary restrictions....BRAT diet. No Dairy. No wheat. No glucose. Only Gatorade. Liquids only. Proteins. No carbohydrates. -0- gram fats. Imodium!!! What goes in, comes out shortly in basically the same format.

Yeah...GI doctor is next on my list of wonderful people to visit again. I wasn't that impressed with him last time as his comment after the endoscopy was "Well, whatever is causing the problem isn't fixable and is probably a result of that strange disorder or disease that you say you have. You'll just have to get used to living with it. Here's a prescription for Previcid."

I go to th Neuro tomorrow. I think I will put in a request for a head transplant. All my problems seem to be related to those parts of my body from the neck up....severe unrelenting headache, double/reduced vision, ringing in the ears, facial neuropathy, uncoordinated tongue/mouth/lips/cheeks(keep biting myself and getting canker sores!) Can't swallow, food/liquids go up nose instead of down throat, what does go down gets stuck or I choke on/aspirate, when it finally goes past the esophageal muscle, I gurgle/burp/reflux then RUN! Of course, that is assuming my brain is sending signals to my legs correctly...half the time my legs are numb and the other half they decide to trip me or give out or cramp up.

I'm just going to stay in the pool....

-the swim lady

[Guest guest]

-Hi karen, I'm sorry you've been having such a tough time with food.... and the

head in general!!! *I agree, it's much more fun in the

pool. If you have a lot of problems with acid, it's possible that you could have

developed a stricture at the stomach end of your

esophagus. The dilatation that I mentioned yesterday, not only seems to help the

general muscle contractions of the esophagus, but

can also be used to get rid of a stricture. Another thing- have your docs

considered the possibility of bacterial overgrowth as

causing/contributing to your diarrhea. My doc gives me a week course of

antibiotics once every 4-6 weeks and it really helps with the

diarrhea, as well as making me feel a whole lot better. Just a few thoughts-

must go, I'm off to ottawa for a few days, Have a good

week everyone, Celia

-- In , swimdel1@a... wrote:

> Swallowing problems have been with me for about 4 years...video swallow

> tests, barium tests, endoscopy. GERD with acid reflux so severe that the

aspirated

> acid has scarred the trachea. Previcid twice a day....possibly caused the

> diarrhea..reduced to once a day. Numerous stool samples for many different

> tests.Stopped all supplements, then re-introduced them....no change.

> Stopped/reduced/weaned off all meds and then re-introduced....no change.

> Dietary restrictions....BRAT diet. No Dairy. No wheat. No glucose. Only

> Gatorade. Liquids only. Proteins. No carbohydrates. -0- gram fats.

Imodium!!!

> What goes in, comes out shortly in basically the same format.

>

> Yeah...GI doctor is next on my list of wonderful people to visit again. I

> wasn't that impressed with him last time as his comment after the endoscopy

was

> " Well, whatever is causing the problem isn't fixable and is probably a result

> of that strange disorder or disease that you say you have. You'll just have

> to get used to living with it. Here's a prescription for Previcid. "

> I go to th Neuro tomorrow. I think I will put in a request for a head

> transplant. All my problems seem to be related to those parts of my body from

the

> neck up....severe unrelenting headache, double/reduced vision, ringing in the

> ears, facial neuropathy, uncoordinated tongue/mouth/lips/cheeks(keep biting

> myself and getting canker sores!) Can't swallow, food/liquids go up nose

instead

> of down throat, what does go down gets stuck or I choke on/aspirate, when it

> finally goes past the esophageal muscle, I gurgle/burp/reflux then RUN! Of

> course, that is assuming my brain is sending signals to my legs

correctly...half

> the time my legs are numb and the other half they decide to trip me or give

out

> or cramp up.

>

> I'm just going to stay in the pool....

> -the swim lady

[Guest guest]

Thank you ...

At least now I have something to consider. Is it possible for me to try the zinc...what is the "zinc therapy" Is it just adding zinc supplement to my already fistful of pills? Is there a special test to determine pancreatic deficiency? Please let me know. e-mail me if you want.

karen-Swim Lady

[Guest guest]

For years I went to doctors, with diarrhea. I would eat and within 15-20 minutes, it would come out, just as I had eaten it. yuck! Of course, I would get the irritable bowel syndrome diagnosis and a myriad of others. It turned out to be pancreatic enzyme insufficiency. My brother had it, so they gave me some pancreas enzymes. If the diarrhea immediately stopped, it was my pancreas. If it continued, it would be something else. Well, it stopped immediately!!! With zinc therapy, my pancreas got a lot better and my teeth improved, also. (I have an error in zinc metabolism, also.)

Blessings,

-- Re: muscle spasm, specifically pelvic

-Hi karen, I'm sorry you've been having such a tough time with food.... and the head in general!!! *I agree, it's much more fun in the pool. If you have a lot of problems with acid, it's possible that you could have developed a stricture at the stomach end of your esophagus. The dilatation that I mentioned yesterday, not only seems to help the general muscle contractions of the esophagus, but can also be used to get rid of a stricture. Another thing- have your docs considered the possibility of bacterial overgrowth as causing/contributing to your diarrhea. My doc gives me a week course of antibiotics once every 4-6 weeks and it really helps with the diarrhea, as well as making me feel a whole lot better. Just a few thoughts- must go, I'm off to ottawa for a few days, Have a good week everyone, Celia-- In , swimdel1@a... wrote:> Swallowing problems have been with me for about 4 years...video swallow > tests, barium tests, endoscopy. GERD with acid reflux so severe that the aspirated > acid has scarred the trachea. Previcid twice a day....possibly caused the > diarrhea..reduced to once a day. Numerous stool samples for many different > tests.Stopped all supplements, then re-introduced them....no change. > Stopped/reduced/weaned off all meds and then re-introduced....no change.> Dietary restrictions....BRAT diet. No Dairy. No wheat. No glucose. Only > Gatorade. Liquids only. Proteins. No carbohydrates. -0- gram fats. Imodium!!! > What goes in, comes out shortly in basically the same format. > > Yeah...GI doctor is next on my list of wonderful people to visit again. I > wasn't that impressed with him last time as his comment after the endoscopy was > "Well, whatever is causing the problem isn't fixable and is probably a result > of that strange disorder or disease that you say you have. You'll just have > to get used to living with it. Here's a prescription for Previcid." > I go to th Neuro tomorrow. I think I will put in a request for a head > transplant. All my problems seem to be related to those parts of my body from the > neck up....severe unrelenting headache, double/reduced vision, ringing in the > ears, facial neuropathy, uncoordinated tongue/mouth/lips/cheeks(keep biting > myself and getting canker sores!) Can't swallow, food/liquids go up nose instead > of down throat, what does go down gets stuck or I choke on/aspirate, when it > finally goes past the esophageal muscle, I gurgle/burp/reflux then RUN! Of > course, that is assuming my brain is sending signals to my legs correctly...half > the time my legs are numb and the other half they decide to trip me or give out > or cramp up.> > I'm just going to stay in the pool....> -the swim ladyMedical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment.Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack.

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

I take zinc each day. My MDA doctor added it and believes we should have

it, along with the folic acid. And yes, all the other pills.

laurie

> From: swimdel1@...

> Reply-To:

> Date: Tue, 17 Feb 2004 23:20:54 EST

> To:

> Subject: Re: muscle spasm, specifically pelvic

>

> Thank you ...

> At least now I have something to consider. Is it possible for me to try the

> zinc...what is the " zinc therapy " Is it just adding zinc supplement to my

> already fistful of pills? Is there a special test to determine pancreatic

> deficiency? Please let me know. e-mail me if you want.

>

> karen-Swim Lady

>

[Guest guest]

---I don't know if anyone mentioned this because I did not read all

of the posts. Your muscle spasms in your pelvis may be from

dehydration and electrolyte imbalance from the chronic diarrhea.

That is when I get muscle spasms. I hope you can find a good GI Dr

who does not blame all of this on your disease and tell you to live

with it. Does he understand that MITO causes other diseases that

need to be treated like everyone else!

Best Wishes!

Dawn

In , swimdel1@a... wrote:

> Swallowing problems have been with me for about 4 years...video

swallow

> tests, barium tests, endoscopy. GERD with acid reflux so severe

that the aspirated

> acid has scarred the trachea. Previcid twice a day....possibly

caused the

> diarrhea..reduced to once a day. Numerous stool samples for many

different

> tests.Stopped all supplements, then re-introduced them....no

change.

> Stopped/reduced/weaned off all meds and then re-introduced....no

change.

> Dietary restrictions....BRAT diet. No Dairy. No wheat. No

glucose. Only

> Gatorade. Liquids only. Proteins. No carbohydrates. -0- gram

fats. Imodium!!!

> What goes in, comes out shortly in basically the same format.

>

> Yeah...GI doctor is next on my list of wonderful people to visit

again. I

> wasn't that impressed with him last time as his comment after the

endoscopy was

> " Well, whatever is causing the problem isn't fixable and is

probably a result

> of that strange disorder or disease that you say you have. You'll

just have

> to get used to living with it. Here's a prescription for

Previcid. "

> I go to th Neuro tomorrow. I think I will put in a request for a

head

> transplant. All my problems seem to be related to those parts of

my body from the

> neck up....severe unrelenting headache, double/reduced vision,

ringing in the

> ears, facial neuropathy, uncoordinated tongue/mouth/lips/cheeks

(keep biting

> myself and getting canker sores!) Can't swallow, food/liquids go

up nose instead

> of down throat, what does go down gets stuck or I choke

on/aspirate, when it

> finally goes past the esophageal muscle, I gurgle/burp/reflux then

RUN! Of

> course, that is assuming my brain is sending signals to my legs

correctly...half

> the time my legs are numb and the other half they decide to trip

me or give out

> or cramp up.

>

> I'm just going to stay in the pool....

> -the swim lady

[Guest guest]

Dawn

Keeping my electrolytes in balance makes a very big difference with me.

Everything has to be in balance to keep the failing engine going the best it

can.

laurie

>

> Reply-To:

> Date: Wed, 18 Feb 2004 18:38:04 -0000

> To:

> Subject: Re: muscle spasm, specifically pelvic

>

> ---I don't know if anyone mentioned this because I did not read all

> of the posts. Your muscle spasms in your pelvis may be from

> dehydration and electrolyte imbalance from the chronic diarrhea.

> That is when I get muscle spasms. I hope you can find a good GI Dr

> who does not blame all of this on your disease and tell you to live

> with it. Does he understand that MITO causes other diseases that

> need to be treated like everyone else!

>

> Best Wishes!

>

> Dawn

>

>

>

>

>

>

>

> In , swimdel1@a... wrote:

>> Swallowing problems have been with me for about 4 years...video

> swallow

>> tests, barium tests, endoscopy. GERD with acid reflux so severe

> that the aspirated

>> acid has scarred the trachea. Previcid twice a day....possibly

> caused the

>> diarrhea..reduced to once a day. Numerous stool samples for many

> different

>> tests.Stopped all supplements, then re-introduced them....no

> change.

>> Stopped/reduced/weaned off all meds and then re-introduced....no

> change.

>> Dietary restrictions....BRAT diet. No Dairy. No wheat. No

> glucose. Only

>> Gatorade. Liquids only. Proteins. No carbohydrates. -0- gram

> fats. Imodium!!!

>> What goes in, comes out shortly in basically the same format.

>>

>> Yeah...GI doctor is next on my list of wonderful people to visit

> again. I

>> wasn't that impressed with him last time as his comment after the

> endoscopy was

>> " Well, whatever is causing the problem isn't fixable and is

> probably a result

>> of that strange disorder or disease that you say you have. You'll

> just have

>> to get used to living with it. Here's a prescription for

> Previcid. "

>> I go to th Neuro tomorrow. I think I will put in a request for a

> head

>> transplant. All my problems seem to be related to those parts of

> my body from the

>> neck up....severe unrelenting headache, double/reduced vision,

> ringing in the

>> ears, facial neuropathy, uncoordinated tongue/mouth/lips/cheeks

> (keep biting

>> myself and getting canker sores!) Can't swallow, food/liquids go

> up nose instead

>> of down throat, what does go down gets stuck or I choke

> on/aspirate, when it

>> finally goes past the esophageal muscle, I gurgle/burp/reflux then

> RUN! Of

>> course, that is assuming my brain is sending signals to my legs

> correctly...half

>> the time my legs are numb and the other half they decide to trip

> me or give out

>> or cramp up.

>>

>> I'm just going to stay in the pool....

>> -the swim lady

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

--- yeah having an electrolyte imbalance can really make you feel

awful. I was feeling really bad since Christmas and sleep all of the

time. I went to see my Dr. two weeks ago and she put me on Florinif.

I am doing great. I can't remember feeling this well for along time.

Like years!!! I am trying to be cautious and not do to much so I

don,t have a crash. It is so hard not to overdo it. I feel like a

bear in the spring who just came out of a cave!! It is a wonderful

feeling!

Smiles,

Dawn

In , Laureta Fitzgerald <lfitzger@j...>

wrote:

> Dawn

>

> Keeping my electrolytes in balance makes a very big difference

with me.

> Everything has to be in balance to keep the failing engine going

the best it

> can.

>

> laurie

>

> > From: " dawnanich " <manich@n...>

> > Reply-To:

> > Date: Wed, 18 Feb 2004 18:38:04 -0000

> > To:

> > Subject: Re: muscle spasm, specifically pelvic

> >

> > ---I don't know if anyone mentioned this because I did not read

all

> > of the posts. Your muscle spasms in your pelvis may be from

> > dehydration and electrolyte imbalance from the chronic diarrhea.

> > That is when I get muscle spasms. I hope you can find a good GI

Dr

> > who does not blame all of this on your disease and tell you to

live

> > with it. Does he understand that MITO causes other diseases that

> > need to be treated like everyone else!

> >

> > Best Wishes!

> >

> > Dawn

> >

> >

> >

> >

> >

> >

> >

> > In , swimdel1@a... wrote:

> >> Swallowing problems have been with me for about 4 years...video

> > swallow

> >> tests, barium tests, endoscopy. GERD with acid reflux so severe

> > that the aspirated

> >> acid has scarred the trachea. Previcid twice a day....possibly

> > caused the

> >> diarrhea..reduced to once a day. Numerous stool samples for

many

> > different

> >> tests.Stopped all supplements, then re-introduced them....no

> > change.

> >> Stopped/reduced/weaned off all meds and then re-introduced....no

> > change.

> >> Dietary restrictions....BRAT diet. No Dairy. No wheat. No

> > glucose. Only

> >> Gatorade. Liquids only. Proteins. No carbohydrates. -0- gram

> > fats. Imodium!!!

> >> What goes in, comes out shortly in basically the same format.

> >>

> >> Yeah...GI doctor is next on my list of wonderful people to visit

> > again. I

> >> wasn't that impressed with him last time as his comment after

the

> > endoscopy was

> >> " Well, whatever is causing the problem isn't fixable and is

> > probably a result

> >> of that strange disorder or disease that you say you have.

You'll

> > just have

> >> to get used to living with it. Here's a prescription for

> > Previcid. "

> >> I go to th Neuro tomorrow. I think I will put in a request for

a

> > head

> >> transplant. All my problems seem to be related to those parts

of

> > my body from the

> >> neck up....severe unrelenting headache, double/reduced vision,

> > ringing in the

> >> ears, facial neuropathy, uncoordinated tongue/mouth/lips/cheeks

> > (keep biting

> >> myself and getting canker sores!) Can't swallow, food/liquids go

> > up nose instead

> >> of down throat, what does go down gets stuck or I choke

> > on/aspirate, when it

> >> finally goes past the esophageal muscle, I gurgle/burp/reflux

then

> > RUN! Of

> >> course, that is assuming my brain is sending signals to my legs

> > correctly...half

> >> the time my legs are numb and the other half they decide to trip

> > me or give out

> >> or cramp up.

> >>

> >> I'm just going to stay in the pool....

> >> -the swim lady

> >

> >

> >

> > Medical advice, information, opinions, data and statements

contained herein

> > are not necessarily those of the list moderators. The author of

this e mail is

> > entirely responsible for its content. List members are reminded

of their

> > responsibility to evaluate the content of the postings and

consult with their

> > physicians regarding changes in their own treatment.

> >

> > Personal attacks are not permitted on the list and anyone who

sends one is

> > automatically moderated or removed depending on the severity of

the attack.

> >

> >

> >

> >

[Guest guest]

Swim Lady,

Ask your doctor about how much zinc to take. I take 660mg of zinc a day, since 1994. That is a lethal amount for most people. He can do a blood test or a tissue zinc count to determine if you have a zinc deficiency. My zinc count in my liver was 0. That is inconsistent with life.

There is a test to determine if you have pancreatic enzyme insufficiency, but it is easier to try the pancreas enzymes to see if they work. There is no doubt, if they work you have it, if they don't you have something else. The testing requires you to go to the hospital and have a tube shoved down your throat. I prefer trying the capsules.

Hope you find out what is wrong,

-- Re: muscle spasm, specifically pelvic

Thank you ...At least now I have something to consider. Is it possible for me to try the zinc...what is the "zinc therapy" Is it just adding zinc supplement to my already fistful of pills? Is there a special test to determine pancreatic deficiency? Please let me know. e-mail me if you want.karen-Swim Lady Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment.Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack.

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Dawn

I am so glad the electrolyte imbalance has been corrected and you are

feeling better. Congratulations on holding back and not over-doing. It is

hard, but necessary.

I have my electrolytes checked every three months to make sure I'm not

spilling anything new or needing more of something. This might not be needed

by some, but is for me.

laurie

>

> Reply-To:

> Date: Thu, 19 Feb 2004 02:50:09 -0000

> To:

> Subject: Re: muscle spasm, specifically pelvic

>

> --- yeah having an electrolyte imbalance can really make you feel

> awful. I was feeling really bad since Christmas and sleep all of the

> time. I went to see my Dr. two weeks ago and she put me on Florinif.

> I am doing great. I can't remember feeling this well for along time.

> Like years!!! I am trying to be cautious and not do to much so I

> don,t have a crash. It is so hard not to overdo it. I feel like a

> bear in the spring who just came out of a cave!! It is a wonderful

> feeling!

>

> Smiles,

>

> Dawn

>

>

>

>

>

>

>

> In , Laureta Fitzgerald <lfitzger@j...>

> wrote:

>> Dawn

>>

>> Keeping my electrolytes in balance makes a very big difference

> with me.

>> Everything has to be in balance to keep the failing engine going

> the best it

>> can.

>>

>> laurie

>>

>>> From: " dawnanich " <manich@n...>

>>> Reply-To:

>>> Date: Wed, 18 Feb 2004 18:38:04 -0000

>>> To:

>>> Subject: Re: muscle spasm, specifically pelvic

>>>

>>> ---I don't know if anyone mentioned this because I did not read

> all

>>> of the posts. Your muscle spasms in your pelvis may be from

>>> dehydration and electrolyte imbalance from the chronic diarrhea.

>>> That is when I get muscle spasms. I hope you can find a good GI

> Dr

>>> who does not blame all of this on your disease and tell you to

> live

>>> with it. Does he understand that MITO causes other diseases that

>>> need to be treated like everyone else!

>>>

>>> Best Wishes!

>>>

>>> Dawn

>>>

>>>

>>>

>>>

>>>

>>>

>>>

>>> In , swimdel1@a... wrote:

>>>> Swallowing problems have been with me for about 4 years...video

>>> swallow

>>>> tests, barium tests, endoscopy. GERD with acid reflux so severe

>>> that the aspirated

>>>> acid has scarred the trachea. Previcid twice a day....possibly

>>> caused the

>>>> diarrhea..reduced to once a day. Numerous stool samples for

> many

>>> different

>>>> tests.Stopped all supplements, then re-introduced them....no

>>> change.

>>>> Stopped/reduced/weaned off all meds and then re-introduced....no

>>> change.

>>>> Dietary restrictions....BRAT diet. No Dairy. No wheat. No

>>> glucose. Only

>>>> Gatorade. Liquids only. Proteins. No carbohydrates. -0- gram

>>> fats. Imodium!!!

>>>> What goes in, comes out shortly in basically the same format.

>>>>

>>>> Yeah...GI doctor is next on my list of wonderful people to visit

>>> again. I

>>>> wasn't that impressed with him last time as his comment after

> the

>>> endoscopy was

>>>> " Well, whatever is causing the problem isn't fixable and is

>>> probably a result

>>>> of that strange disorder or disease that you say you have.

> You'll

>>> just have

>>>> to get used to living with it. Here's a prescription for

>>> Previcid. "

>>>> I go to th Neuro tomorrow. I think I will put in a request for

> a

>>> head

>>>> transplant. All my problems seem to be related to those parts

> of

>>> my body from the

>>>> neck up....severe unrelenting headache, double/reduced vision,

>>> ringing in the

>>>> ears, facial neuropathy, uncoordinated tongue/mouth/lips/cheeks

>>> (keep biting

>>>> myself and getting canker sores!) Can't swallow, food/liquids go

>>> up nose instead

>>>> of down throat, what does go down gets stuck or I choke

>>> on/aspirate, when it

>>>> finally goes past the esophageal muscle, I gurgle/burp/reflux

> then

>>> RUN! Of

>>>> course, that is assuming my brain is sending signals to my legs

>>> correctly...half

>>>> the time my legs are numb and the other half they decide to trip

>>> me or give out

>>>> or cramp up.

>>>>

>>>> I'm just going to stay in the pool....

>>>> -the swim lady

>>>

>>>

>>>

>>> Medical advice, information, opinions, data and statements

> contained herein

>>> are not necessarily those of the list moderators. The author of

> this e mail is

>>> entirely responsible for its content. List members are reminded

> of their

>>> responsibility to evaluate the content of the postings and

> consult with their

>>> physicians regarding changes in their own treatment.

>>>

>>> Personal attacks are not permitted on the list and anyone who

> sends one is

>>> automatically moderated or removed depending on the severity of

> the attack.

>>>

>>>

>>>

>>>

[Guest guest]

It sometimes seems as if I live on Gatorade.

My primary doctor is a real sweetie. When we were running all these different tests, stool samples for everything under the sun, blood tests, weird dietary restrictions, adjusting medications supplements, trial antibiotics, etc. she looked at me, grinned and said "Well, it's a heck of a diet and to the best of my knowledge, I believe that most people can survive at least 5-6 month on Gatorade alone...after that they need to add a little more to thier diets....maybe chocolate"

-the Swim Lady

[Guest guest]

...I love the mermaid.....You are sooooo sweet! I really am excited now. I am going to call primary on Monday and give her the information so she can order the blood test and also I will get the zinc capsules (not necessarily as much as you take to start!) to see if that helps. Hopefully my "get up and go" will slow down and I will stop having this "run-down" feeling!

-swim lady

[Guest guest]

--- I always have room for chocalate!!

smilesdawn

I always have room for chocalateIn ,

swimdel1@a... wrote:

> It sometimes seems as if I live on Gatorade.

> My primary doctor is a real sweetie. When we were running all

these

> different tests, stool samples for everything under the sun, blood

tests, weird

> dietary restrictions, adjusting medications supplements, trial

antibiotics, etc.

> she looked at me, grinned and said " Well, it's a heck of a diet

and to the best

> of my knowledge, I believe that most people can survive at least 5-

6 month on

> Gatorade alone...after that they need to add a little more to

thier

> diets....maybe chocolate "

> -the Swim Lady