Myasthenia Gravis Therapy

Re: [MMGS] QUESTION RE; MEDICATIONS CAUSING KIDNEY FAILURE

2011-09-28T23:05:00.000-07:00

I know that a lot of people with Lupus experience kidney failure. I had slight kidney involvement a number of years ago and they put me on prednisone and had been going to do methotrexate, but the prednisone took care of things. I'm thinking that kidney failure just means that certain things that are supposed to be filtered out aren't presently being filtered. It totally depends upon the cause as to whether it's reversible. Mine was. I can't remember what % of kidney functioning you have to get to before they talk dialysis. It's fairly low.

Amy

Every flower that has ever bloomed went through a whole lot of dirt to get there!

----- Reply message -----
From: "swallow_stal" <swallow_stal@yahoo.ca>
Date: Wed, Sep 28, 2011 9:14 pm
Subject: [MMGS] QUESTION RE; MEDICATIONS CAUSING KIDNEY FAILURE
To: <maddysmgsupport@yahoogroups.com>

Hi Alice,
I'm happy to hear that your dog got better. My 17 yr old "puppy" is dealing with kidney failure and is on a special diet.

Thanks anyways,
Swallow

--- In maddysmgsupport@yahoogroups.com, Alice James <ali.james011@...> wrote:
>
> I don't know if this helps, but my dog had kidney failure and after a month
> or so, recovered just fine. Not sure what kidney failure means exactly--but
> maybe the treatment will make you feel better? the word 'failure' is just so
> awful! but maybe, since it's not an infection that creeped up from your
> bladder or cancer of the bladder or severe diabetes,
> it can be resolved???
> so sorry---
> this stinks
> Love
> alice

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Re: [MMGS] RE : FLU SHOTS

2011-09-28T21:22:00.000-07:00

Lorraine, I have never had any problem with the shot.

Amy

Every flower that has ever bloomed went through a whole lot of dirt to get there!

----- Reply message -----
From: ludstevens91@aol.com
Date: Wed, Sep 28, 2011 5:11 pm
Subject: [MMGS] RE : FLU SHOTS
To: <maddysmgsupport@yahoogroups.com>

HI ALL,

DO YOU ALL GET THE FLU SHOT ?

IN MY 10 YEARS OF HAVING MG I WAS ADVISED TO GETTING IT. BUT NEURO , INTERNIST AND PULMONARY DOCS ALL SAY TO GET IT.

IM CONCERNED ...

THANKS

Lorraine Ludwico Stevens

Be kinder than necessary for someone else is fighting some kind of battle

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Re: [MMGS] RE : FLU SHOTS

2011-09-28T17:27:00.001-07:00

Ty Michelle , I'm not allergic to eggs ....I had P shot in the late 90's before MG .

Lorraine Ludwico Stevens

On Sep 28, 2011, at 8:19 PM, Michelle Herd <emtsrhot@yahoo.com> wrote:

Lorraine,

I only got one flu shot in my life and i got so very sick from it.But what the doc didn't bother to tell me was people that are allergic to eggs are not suppose to get them and i am highly allergic to eggs.I won't ever get another one and i don't get Pneumonia shots either.

hugs,

Michelle

From: "ludstevens91@aol.com" <ludstevens91@aol.com>
To: maddysmgsupport@yahoogroups.com
Sent: Wednesday, September 28, 2011 3:11 PM
Subject: [MMGS] RE : FLU SHOTS

HI ALL,

DO YOU ALL GET THE FLU SHOT ?

IN MY 10 YEARS OF HAVING MG I WAS ADVISED TO GETTING IT. BUT NEURO , INTERNIST AND PULMONARY DOCS ALL SAY TO GET IT.

IM CONCERNED ...

THANKS

Lorraine Ludwico Stevens

Be kinder than necessary for someone else is fighting some kind of battle

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Re: [MMGS] RE : FLU SHOTS

2011-09-28T17:19:00.000-07:00

Lorraine,

I only got one flu shot in my life and i got so very sick from it.But what the doc didn't bother to tell me was people that are allergic to eggs are not suppose to get them and i am highly allergic to eggs.I won't ever get another one and i don't get Pneumonia shots either.

hugs,

Michelle

From: "ludstevens91@aol.com" <ludstevens91@aol.com>
To: maddysmgsupport@yahoogroups.com
Sent: Wednesday, September 28, 2011 3:11 PM
Subject: [MMGS] RE : FLU SHOTS

HI ALL,

DO YOU ALL GET THE FLU SHOT ?

IN MY 10 YEARS OF HAVING MG I WAS ADVISED TO GETTING IT. BUT NEURO , INTERNIST AND PULMONARY DOCS ALL SAY TO GET IT.

IM CONCERNED ...

THANKS

Lorraine Ludwico Stevens

Be kinder than necessary for someone else is fighting some kind of battle

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Re: [MMGS] EMG and Single Fiber

2011-09-28T17:15:00.000-07:00

It's just so crazy Alice .. I read most posts but don't comment often . But keep you in my prayers .

Praying you can have a great time in SF despite infection !

Take care

Lorraine Ludwico Stevens

On Sep 28, 2011, at 8:04 PM, Alice James <ali.james011@gmail.com> wrote:

HI Lorraine!
thanks... I wish I felt the way you describe. I have done some amazing things even while very ill. But the one thing I cannot do without I guess somehow moving to a specialty center area is get a real LEMS on paper diagnosis. Only hints. Too rare, never seen it-
god knows what else.
and now I am going to SF with an untreated bladder infection (from the catheter)-yow.
wish me luck!!
anything to see my grandson a few times!
Love
Alice

On Wed, Sep 28, 2011 at 7:50 PM, Lorraine Stevens <ludstevens91@aol.com> wrote:

I swear Alice ...you have been through more than anyone person should . All the DX all the non Dx .
What a talented ,gifted women you are . And so strong !!!
God Bless you !!

Lorraine Ludwico Stevens

On Sep 28, 2011, at 7:47 PM, Alice James <ali.james011@gmail.com> wrote:

wow
this is very interesting to m3
being so called sero-negative, no one will test me. they just give me mestinon
b/c of my breathing and eyes and choking

Alice

On Wed, Sep 28, 2011 at 7:56 AM, <ludstevens91@aol.com> wrote:

ME

LORRAINE

In a message dated 9/27/2011 9:21:01 P.M. Eastern Daylight Time, kj4pyy@gmail.com writes:

Curious???
How many are seronegative (blood test results are negative), have a positive EMG and a negative single fiber test???

Franny

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Re: [MMGS] EMG and Single Fiber

2011-09-28T17:04:00.001-07:00

HI Lorraine!
thanks... I wish I felt the way you describe. I have done some amazing things even while very ill. But the one thing I cannot do without I guess somehow moving to a specialty center area is get a real LEMS on paper diagnosis. Only hints. Too rare, never seen it-
god knows what else.
and now I am going to SF with an untreated bladder infection (from the catheter)-yow.
wish me luck!!
anything to see my grandson a few times!
Love
Alice

On Wed, Sep 28, 2011 at 7:50 PM, Lorraine Stevens <ludstevens91@aol.com> wrote:

I swear Alice ...you have been through more than anyone person should . All the DX all the non Dx .
What a talented ,gifted women you are . And so strong !!!
God Bless you !!

Lorraine Ludwico Stevens

On Sep 28, 2011, at 7:47 PM, Alice James <ali.james011@gmail.com> wrote:

wow
this is very interesting to m3
being so called sero-negative, no one will test me. they just give me mestinon
b/c of my breathing and eyes and choking

Alice

On Wed, Sep 28, 2011 at 7:56 AM, <ludstevens91@aol.com> wrote:

ME

LORRAINE

In a message dated 9/27/2011 9:21:01 P.M. Eastern Daylight Time, kj4pyy@gmail.com writes:

Curious???
How many are seronegative (blood test results are negative), have a positive EMG and a negative single fiber test???

Franny

__._,_.___

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Re: [MMGS] QUESTION RE; MEDICATIONS CAUSING KIDNEY FAILURE

2011-09-28T16:59:00.001-07:00

I don't know if this helps, but my dog had kidney failure and after a month or so, recovered just fine. Not sure what kidney failure means exactly--but maybe the treatment will make you feel better? the word 'failure' is just so awful! but maybe, since it's not an infection that creeped up from your bladder or cancer of the bladder or severe diabetes,
it can be resolved???
so sorry---
this stinks
Love
alice

On Wed, Sep 28, 2011 at 7:43 PM, Lorraine Stevens <ludstevens91@aol.com> wrote:

Do you have Lupus ?
It still can be an aftermath of the NSAI
That's all I can suggest Swallow ..
Sorry : /

Lorraine Ludwico Stevens

On Sep 28, 2011, at 7:29 PM, "swallow_stal" <swallow_stal@yahoo.ca> wrote:

Hi All,
I need to pick your brains (mine packed a kidney and left town).

My 2nd blood test verified the 1st - creatinine levels are high and renal failure is around the bend....

Now, I'm trying to figure out why.

Keep in mind that I:
- am not diabetic
- don't drink
- don't smoke (just had to throw that one in)
- don't eat a lot of red meat
- am not dehydrated
Heck, I don't even swear (most times).

I haven't added any new drugs to my regimen. For example:

- I've been on Imuran for 2-3 years and was told that it could affect my liver, but my results have always been good.

- I've been on prednisone for about the same amount of time and was told that it I need to take precautions so it won't affect bone density and my tests have been good.

- I've been on NSAIDS for about 7 months now (arthritis) and when I was told it can affect my kidney's and boost my creatinine levels, I stopped immediately - and had to boost the prednisone by 5mg to make up for it.

So, WHAT AM I DOING WRONG????
Sorry, yelling is better than crying..my face is too red already.....

Swallow

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Re: [MMGS] EMG and Single Fiber

2011-09-28T16:50:00.000-07:00

I swear Alice ...you have been through more than anyone person should . All the DX all the non Dx .

What a talented ,gifted women you are . And so strong !!!

God Bless you !!

Lorraine Ludwico Stevens

On Sep 28, 2011, at 7:47 PM, Alice James <ali.james011@gmail.com> wrote:

wow
this is very interesting to m3
being so called sero-negative, no one will test me. they just give me mestinon
b/c of my breathing and eyes and choking

Alice

On Wed, Sep 28, 2011 at 7:56 AM, <ludstevens91@aol.com> wrote:

ME

LORRAINE

In a message dated 9/27/2011 9:21:01 P.M. Eastern Daylight Time, kj4pyy@gmail.com writes:

Curious???
How many are seronegative (blood test results are negative), have a positive EMG and a negative single fiber test???

Franny

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Re: [MMGS] EMG and Single Fiber

2011-09-28T16:47:00.001-07:00

wow
this is very interesting to m3
being so called sero-negative, no one will test me. they just give me mestinon
b/c of my breathing and eyes and choking

Alice

On Wed, Sep 28, 2011 at 7:56 AM, <ludstevens91@aol.com> wrote:

ME

LORRAINE

In a message dated 9/27/2011 9:21:01 P.M. Eastern Daylight Time, kj4pyy@gmail.com writes:

Curious???
How many are seronegative (blood test results are negative), have a positive EMG and a negative single fiber test???

Franny

__._,_.___

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Re: [MMGS] QUESTION RE; MEDICATIONS CAUSING KIDNEY FAILURE

2011-09-28T16:43:00.000-07:00

Do you have Lupus ?

It still can be an aftermath of the NSAI

That's all I can suggest Swallow ..

Sorry : /

Lorraine Ludwico Stevens

On Sep 28, 2011, at 7:29 PM, "swallow_stal" <swallow_stal@yahoo.ca> wrote:

Hi All,
I need to pick your brains (mine packed a kidney and left town).

My 2nd blood test verified the 1st - creatinine levels are high and renal failure is around the bend....

Now, I'm trying to figure out why.

Keep in mind that I:
- am not diabetic
- don't drink
- don't smoke (just had to throw that one in)
- don't eat a lot of red meat
- am not dehydrated
Heck, I don't even swear (most times).

I haven't added any new drugs to my regimen. For example:

- I've been on Imuran for 2-3 years and was told that it could affect my liver, but my results have always been good.

- I've been on prednisone for about the same amount of time and was told that it I need to take precautions so it won't affect bone density and my tests have been good.

- I've been on NSAIDS for about 7 months now (arthritis) and when I was told it can affect my kidney's and boost my creatinine levels, I stopped immediately - and had to boost the prednisone by 5mg to make up for it.

So, WHAT AM I DOING WRONG????
Sorry, yelling is better than crying..my face is too red already.....

Swallow

__._,_.___

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Re: [MMGS] RE : FLU SHOTS

2011-09-28T16:14:00.000-07:00

THANK YOU

In a message dated 9/28/2011 7:14:01 P.M. Eastern Daylight Time, hairitis900@comcast.net writes:

My neuro wont let me get one..So i make sure everyone in my house does..

From: ludstevens91@aol.com
To: maddysmgsupport@yahoogroups.com
Sent: Wednesday, September 28, 2011 6:11:10 PM
Subject: [MMGS] RE : FLU SHOTS

HI ALL,

DO YOU ALL GET THE FLU SHOT ?

IN MY 10 YEARS OF HAVING MG I WAS ADVISED TO GETTING IT. BUT NEURO , INTERNIST AND PULMONARY DOCS ALL SAY TO GET IT.

IM CONCERNED ...

THANKS

Lorraine Ludwico Stevens

Be kinder than necessary for someone else is fighting some kind of battle

__._,_.___

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Re: [MMGS] RE : FLU SHOTS

2011-09-28T16:13:00.000-07:00

My neuro wont let me get one..So i make sure everyone in my house does..

From: ludstevens91@aol.com
To: maddysmgsupport@yahoogroups.com
Sent: Wednesday, September 28, 2011 6:11:10 PM
Subject: [MMGS] RE : FLU SHOTS

HI ALL,

DO YOU ALL GET THE FLU SHOT ?

IN MY 10 YEARS OF HAVING MG I WAS ADVISED TO GETTING IT. BUT NEURO , INTERNIST AND PULMONARY DOCS ALL SAY TO GET IT.

IM CONCERNED ...

THANKS

Lorraine Ludwico Stevens

Be kinder than necessary for someone else is fighting some kind of battle

__._,_.___

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Re: [MMGS] RE : FLU SHOTS

2011-09-28T16:06:00.000-07:00

Have you ever gotten sick from it ? Weak ? Breathing issues ?

Lorraine Ludwico Stevens

On Sep 28, 2011, at 7:04 PM, "marshmalloskittles" <marshmalloskittles@att.net> wrote:

My neuro, pulmonologist and internist had told me to definitely get it so I GET IT!

From: ludstevens91@aol.com

Sent: Wednesday, September 28, 2011 6:11 PM

To: maddysmgsupport@yahoogroups.com

Subject: [MMGS] RE : FLU SHOTS

HI ALL,

DO YOU ALL GET THE FLU SHOT ?

IN MY 10 YEARS OF HAVING MG I WAS ADVISED TO GETTING IT. BUT NEURO , INTERNIST AND PULMONARY DOCS ALL SAY TO GET IT.

IM CONCERNED ...

THANKS

Lorraine Ludwico Stevens

Be kinder than necessary for someone else is fighting some kind of battle

__._,_.___

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Re: [MMGS] RE : FLU SHOTS

2011-09-28T16:04:00.001-07:00

My neuro, pulmonologist and internist had told me to definitely get it so I GET IT!

From: ludstevens91@aol.com

Sent: Wednesday, September 28, 2011 6:11 PM

To: maddysmgsupport@yahoogroups.com

Subject: [MMGS] RE : FLU SHOTS

HI ALL,

DO YOU ALL GET THE FLU SHOT ?

IN MY 10 YEARS OF HAVING MG I WAS ADVISED TO GETTING IT. BUT NEURO , INTERNIST AND PULMONARY DOCS ALL SAY TO GET IT.

IM CONCERNED ...

THANKS

Lorraine Ludwico Stevens

Be kinder than necessary for someone else is fighting some kind of battle

__._,_.___

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[MMGS] RE : FLU SHOTS

2011-09-28T15:11:00.001-07:00

HI ALL,

DO YOU ALL GET THE FLU SHOT ?

IN MY 10 YEARS OF HAVING MG I WAS ADVISED TO GETTING IT. BUT NEURO , INTERNIST AND PULMONARY DOCS ALL SAY TO GET IT.

IM CONCERNED ...

THANKS

Lorraine Ludwico Stevens

Be kinder than necessary for someone else is fighting some kind of battle

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Re: [MMGS] Re: EMG and Single Fiber

2011-09-28T12:04:00.000-07:00

REALLY FRANNY?

MINE HAS NEVER BEEN QUESTIONED.. ITS PRETTY CLEAR I HAVE IT. IF ITS SOMETHING ELSE WELL I DONT KNOW WHAT , THEN ... LO L WASNT WISH IT !!

In a message dated 9/28/2011 2:37:48 P.M. Eastern Daylight Time, kj4pyy@gmail.com writes:

my only positive test is an EMG (RNS)...so every couple of years my diagnosis always gets questioned. They can drive you crazy!

Franny

--- In maddysmgsupport@yahoogroups.com, "Freida Lewis" <flewis@...> wrote:
>
> I'm in that "lucky" 3% that's negative on every test, but have almost every symptom and respond quickly to Mestinon.
> Freida
>

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[MMGS] Re: EMG and Single Fiber

2011-09-28T11:37:00.001-07:00

my only positive test is an EMG (RNS)...so every couple of years my diagnosis always gets questioned. They can drive you crazy!

Franny

--- In maddysmgsupport@yahoogroups.com, "Freida Lewis" <flewis@...> wrote:
>
> I'm in that "lucky" 3% that's negative on every test, but have almost every symptom and respond quickly to Mestinon.
> Freida
>

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[MMGS] Re: EMG and Single Fiber

2011-09-28T09:44:00.001-07:00

I'm in that "lucky" 3% that's negative on every test, but have almost every symptom and respond quickly to Mestinon.

Freida

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Re: [MMGS] EMG and Single Fiber

2011-09-28T08:29:00.001-07:00

Hi Franny ,

I'm

Sero neg with positive SFEMG and RNS

Lorraine Ludwico Stevens

On Sep 28, 2011, at 11:26 AM, "kj4pyy" <kj4pyy@gmail.com> wrote:

Ar your positive or negative Lorraine...there a great deal of controversy over the EMG...i have docs who disagree. My RNS. repetitive nerve stim results stink, but my single fiber is normal. some say you must have a positive SFEMG to have MG. and others say it is only positive in about 95% and not conclusive. They can drive your crazy!

Swallow/Stan...if you have a postive SFEMG, how can they call it conversion disorder, unless you have both. Which is possible?

Franny

--- In maddysmgsupport@yahoogroups.com, ludstevens91@... wrote:
>
> ME
>
> LORRAINE
>
>
> In a message dated 9/27/2011 9:21:01 P.M. Eastern Daylight Time,
> kj4pyy@... writes:
>
>
>
>
> Curious???
> How many are seronegative (blood test results are negative), have a
> positive EMG and a negative single fiber test???
>
> Franny
>

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Re: [MMGS] EMG and Single Fiber

2011-09-28T08:26:00.001-07:00

Ar your positive or negative Lorraine...there a great deal of controversy over the EMG...i have docs who disagree. My RNS. repetitive nerve stim results stink, but my single fiber is normal. some say you must have a positive SFEMG to have MG. and others say it is only positive in about 95% and not conclusive. They can drive your crazy!

Swallow/Stan...if you have a postive SFEMG, how can they call it conversion disorder, unless you have both. Which is possible?

Franny

--- In maddysmgsupport@yahoogroups.com, ludstevens91@... wrote:
>
> ME
>
> LORRAINE
>
>
> In a message dated 9/27/2011 9:21:01 P.M. Eastern Daylight Time,
> kj4pyy@... writes:
>
>
>
>
> Curious???
> How many are seronegative (blood test results are negative), have a
> positive EMG and a negative single fiber test???
>
> Franny
>

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Re: [MMGS] EMG and Single Fiber

2011-09-28T04:56:00.001-07:00

LORRAINE

In a message dated 9/27/2011 9:21:01 P.M. Eastern Daylight Time, kj4pyy@gmail.com writes:

Curious???
How many are seronegative (blood test results are negative), have a positive EMG and a negative single fiber test???

Franny

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Re: [MMGS] EMG and Single Fiber

2011-09-27T19:52:00.001-07:00

wife is sero-neg/ pos emg /never had sfemg

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

From: kj4pyy

To: maddysmgsupport@yahoogroups.com

Sent: Tuesday, September 27, 2011 6:20 PM

Subject: [MMGS] EMG and Single Fiber

Curious???
How many are seronegative (blood test results are negative), have a positive EMG and a negative single fiber test???

Franny

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Re: [MMGS] EMG and Single Fiber

2011-09-27T18:55:00.000-07:00

I’m seronegative but had a negative EMG and positive SFEMG.

No room for wasted spoons!!!

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Re: [MMGS] EMG and Single Fiber

2011-09-27T18:49:00.001-07:00

Because I am sero-negative (but have CV2 and High IGg and IGm) no one will do a single fiber nerve test. so....

alice

On Tue, Sep 27, 2011 at 9:20 PM, kj4pyy <kj4pyy@gmail.com> wrote:

Curious???
How many are seronegative (blood test results are negative), have a positive EMG and a negative single fiber test???

Franny

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[MMGS] Re: EMG and Single Fiber

2011-09-27T18:45:00.001-07:00

Hi Franny,
I'm seronegative and my SFEMG was positive. I don't even recall the results of my EMG.
Swallow

--- In maddysmgsupport@yahoogroups.com, "kj4pyy" <kj4pyy@...> wrote:
>
> Curious???
> How many are seronegative (blood test results are negative), have a positive EMG and a negative single fiber test???
>
> Franny
>

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[MMGS] EMG and Single Fiber

2011-09-27T18:20:00.000-07:00

Curious???
How many are seronegative (blood test results are negative), have a positive EMG and a negative single fiber test???

Franny

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[MMGS] when not to Exercise

2011-09-26T08:54:00.001-07:00

When not to exercise...i found this interesting

While some think of the sniffles as a great reason to skip the gym, others are eager to heal themselves with a good old-fashioned workout. Read on to find out when exercising while sick is a good thing-and when it's better to curl up with a big bowl of chicken soup.

Physical medicine and rehabilitation specialist Edward R. Laskowski, M.D. at the The Mayo Clinic offers this advice: "Mild to moderate physical activity is usually OK if you have a cold but no fever. Exercise may even help you feel better by temporarily relieving nasal congestion.

Laskowski and fitness experts say, use the rule of "neck" as your guideline. If your symptoms are:

Above the neck. Runny nose, congestion, sore throat, headache? Go ahead and work out.
Below the neck. Chest congestion, hacking cough, stomach or intestinal upset? Give your self a break.
If you have a fever, stay home. While experts advise sitting it out if your fever is greater than 101° F, most of us feel pretty lousy with even a lower fever. Instead of your usual run, take a walk, do a little stretching or simply rest.

Will it hurt you to exercise when you're sick? The American College of Sports Medicine says the common cold is the most frequently occurring illness worldwide. Here's their advice: "Mild-to-moderate exercise (e.g., walking) when sick with the common cold does not appear to be harmful. In two studies using nasal sprays of a rhinovirus leading to common cold symptoms, subjects were able to engage in exercise during the course of the illness without any negative effects on severity of symptoms or performance capability."

What if you're really sick? ACSM says, "With a symptom complex of fever, extreme tiredness, muscle aches, and swollen lymph glands, 2-4 weeks should probably be allowed before resumption of intensive training."

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Re: [MMGS] "Conversion Disorder" for Alice

2011-09-25T16:33:00.001-07:00

did i send this twice? sorry

On Sun, Sep 25, 2011 at 7:31 PM, Alice James <ali.james011@gmail.com> wrote:

Hmmm
well you seem totally normal to me.
i was the "unwanted' daughter --2 sons wasn't enough and I got all the IQ probably of my whole family put together. Dad was post world war 2 south pacific PTSD with violent abrupt outbursts of rage interspersed with playfulness, curiosity, high energy and humor. Everyone was involved in music (I was told this was a red flag?? as is art!). I was Cinderella, given household tasks by the pile, and never good enough. But still--nearly everyone hears something like this as they are growing up. Oddly my two brothers were the sick ones-
constantly ill with something or other. Now both healthy as horses....except my alcoholic older one, who also was a total family loser, poor reader, great artist.
The only thing I can think of was my mom took DET during my 12th week in gestation and I did get cervical precancer and cervical problems (2 miscarriages) from that. Then there is the DDT issue. It was EVERYWHERE.

My mom was creative, calm, hilarious, very smart but insecure about not having a college education. She also wasn't totally honest and put up with my dad's rages way too much. He beat us when we were under 5 but she stopped him. And then he went totally bonkers during Viet Nam
when I was around 16 (1968) and my brother beat the draft by wearing women's undies.
His favorite move was to force us both out of the house--so we'd sit on the curb for hours or go wandering off. He withheld medical attention from me--when I got appendicitis and a broken foot in a sledding mishap.

On the other hand, my grandparents and great aunt were extremely kind to me, my mom too. In any case, I graduated at 17 and never went home much after that. His hatred of women seemed to grow as he got older, although he treated my sons very well (lucky they weren't girls).

As my older brother said, he did everything he could to make me invisible. Extra chores, extra coursework, banning me to my bedroom or outside, interrupting me whenever I spoke but he does this to all women. So I felt pretty much invisible.

I guess no father-figure role model, so I married guys who seemed very kind and involved but in fact were underneath that, abandoners. then I got sick around age 44.
Limbic/brain encephalistis-infected gall bladder botched. My mom and grandma all had gall bladder removals around the same age.

So maybe at age 44, I decided to get sick because my brothers were sick when they were little. But I heard that personality doesn't change much in mid-life, esp if things were going well. I don't know. And I've never heard that get sick because your brothers were sick thing before. But I do have a movement disorder that is worse when I am tired, stressed, trying to hurry or startled.

There are the skeletons in my closet.
love
Alice

On Sun, Sep 25, 2011 at 2:51 PM, swallow_stal <swallow_stal@yahoo.ca> wrote:

Hi Alice,
Rather than muddy the waters of "I'm a Sombody", I thought I'd start a new topic.

After filling out a questionnaire with approx 160 True/False choices, the scoring showed that I had a very high rate of Hypochondria and something else (can't remember what it was).

I was sent to a psychiatrist who asked all sorts of questions about my childhood and current family situation, etc.

He determined that there were no boundaries between adult & child in my home (my mother treated me as her confidante, so people wouldn't know her business).

Being the eldest, I was expected to step into my mothers shoes (she has Lupus and my father is a Doofus). Add to that the fact that I was molested for approx 7 yrs by a great uncle (whom after 20 yrs, I hope is STILL burning in Hell), that's when the TRUE picture came out!

I have Conversion Disorder!

Conversion Disorder, as was explained to me is when the only acceptable way to get positive attention is by taking psychological problems and turning them into a physical illness. It was also quickly pointed out that one may have both Conversion Disorder AND another disorder (i.e. MG, MS, etc), because we are so focused on what's happening with our bodies.

Strange thing is that I don't have many of the symptoms associated with the "illness". For instance, in order to be dx'd with Conversion Disorder, I have to meet at least 4 criteria from the list below:

•A history of pain affecting at least four different parts or functions of the body. Examples include headaches, back, joint, chest or abdominal pain, or pain during menstruation or sexual intercourse for which there is no known cause.

•A history of at least two gastrointestinal symptoms, such as nausea, bloating, vomiting, diarrhea, or food intolerance for which there is no known cause.

•There must be a history of at least one sexual or reproductive symptom, such as lack of interest in sex, problems achieving erection or ejaculation, irregular menstrual periods, excessive menstrual bleeding, or vomiting throughout pregnancy for which there is no known cause.

•One symptom must mimic a neurological condition. Examples include weakness, paralysis, problems with balance or coordination, seizures, hallucinations , loss of sensations such as touch, seeing, hearing, tasting, smelling—or difficulty swallowing or speaking, or amnesia and loss of consciousness. Pseudo-neurologic symptoms like these are the primary characteristics of another somatoform disorder known as "conversion disorder."

Okay, so I admit it:
* I have Irritable Bowel Syndrome, Diverticulitis & Graves Disease.
* Due to internal problems, after my children were born,"relations" were virtually intolerable - until after surgery.
* The first 3 1/2 months of both pregnancies had me barfing my guts out nearly 24 hrs a day.
* I have vision problems, and issues with swallowing and speaking, as well as problems with balance and weakness.

I've never lost consciousness or had a seizure or lost my sense of taste, smell or sensation in any part of my body, etc., etc..

Finally, according to the reading I've done, once dx'd most people with Conversion Disorder usually get over it within a few weeks(?).

I must be have a very stubborn case, since the dr's have been referring to it for the last 6 months or more and I'm STILL not cured.

So, that's me - crazier than an outhouse rat sniffing methane...

I hope this answers your question(s).
Swallow

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Re: [MMGS] "Conversion Disorder" for Alice

2011-09-25T16:31:00.001-07:00

Hmmm
well you seem totally normal to me.
i was the "unwanted' daughter --2 sons wasn't enough and I got all the IQ probably of my whole family put together. Dad was post world war 2 south pacific PTSD with violent abrupt outbursts of rage interspersed with playfulness, curiosity, high energy and humor. Everyone was involved in music (I was told this was a red flag?? as is art!). I was Cinderella, given household tasks by the pile, and never good enough. But still--nearly everyone hears something like this as they are growing up. Oddly my two brothers were the sick ones-
constantly ill with something or other. Now both healthy as horses....except my alcoholic older one, who also was a total family loser, poor reader, great artist.
The only thing I can think of was my mom took DET during my 12th week in gestation and I did get cervical precancer and cervical problems (2 miscarriages) from that. Then there is the DDT issue. It was EVERYWHERE.

My mom was creative, calm, hilarious, very smart but insecure about not having a college education. She also wasn't totally honest and put up with my dad's rages way too much. He beat us when we were under 5 but she stopped him. And then he went totally bonkers during Viet Nam
when I was around 16 (1968) and my brother beat the draft by wearing women's undies.
His favorite move was to force us both out of the house--so we'd sit on the curb for hours or go wandering off. He withheld medical attention from me--when I got appendicitis and a broken foot in a sledding mishap.

On the other hand, my grandparents and great aunt were extremely kind to me, my mom too. In any case, I graduated at 17 and never went home much after that. His hatred of women seemed to grow as he got older, although he treated my sons very well (lucky they weren't girls).

As my older brother said, he did everything he could to make me invisible. Extra chores, extra coursework, banning me to my bedroom or outside, interrupting me whenever I spoke but he does this to all women. So I felt pretty much invisible.

I guess no father-figure role model, so I married guys who seemed very kind and involved but in fact were underneath that, abandoners. then I got sick around age 44.
Limbic/brain encephalistis-infected gall bladder botched. My mom and grandma all had gall bladder removals around the same age.

So maybe at age 44, I decided to get sick because my brothers were sick when they were little. But I heard that personality doesn't change much in mid-life, esp if things were going well. I don't know. And I've never heard that get sick because your brothers were sick thing before. But I do have a movement disorder that is worse when I am tired, stressed, trying to hurry or startled.

There are the skeletons in my closet.
love
Alice

On Sun, Sep 25, 2011 at 2:51 PM, swallow_stal <swallow_stal@yahoo.ca> wrote:

Hi Alice,
Rather than muddy the waters of "I'm a Sombody", I thought I'd start a new topic.

After filling out a questionnaire with approx 160 True/False choices, the scoring showed that I had a very high rate of Hypochondria and something else (can't remember what it was).

I was sent to a psychiatrist who asked all sorts of questions about my childhood and current family situation, etc.

He determined that there were no boundaries between adult & child in my home (my mother treated me as her confidante, so people wouldn't know her business).

Being the eldest, I was expected to step into my mothers shoes (she has Lupus and my father is a Doofus). Add to that the fact that I was molested for approx 7 yrs by a great uncle (whom after 20 yrs, I hope is STILL burning in Hell), that's when the TRUE picture came out!

I have Conversion Disorder!

Conversion Disorder, as was explained to me is when the only acceptable way to get positive attention is by taking psychological problems and turning them into a physical illness. It was also quickly pointed out that one may have both Conversion Disorder AND another disorder (i.e. MG, MS, etc), because we are so focused on what's happening with our bodies.

Strange thing is that I don't have many of the symptoms associated with the "illness". For instance, in order to be dx'd with Conversion Disorder, I have to meet at least 4 criteria from the list below:

•A history of pain affecting at least four different parts or functions of the body. Examples include headaches, back, joint, chest or abdominal pain, or pain during menstruation or sexual intercourse for which there is no known cause.

•A history of at least two gastrointestinal symptoms, such as nausea, bloating, vomiting, diarrhea, or food intolerance for which there is no known cause.

•There must be a history of at least one sexual or reproductive symptom, such as lack of interest in sex, problems achieving erection or ejaculation, irregular menstrual periods, excessive menstrual bleeding, or vomiting throughout pregnancy for which there is no known cause.

•One symptom must mimic a neurological condition. Examples include weakness, paralysis, problems with balance or coordination, seizures, hallucinations , loss of sensations such as touch, seeing, hearing, tasting, smelling—or difficulty swallowing or speaking, or amnesia and loss of consciousness. Pseudo-neurologic symptoms like these are the primary characteristics of another somatoform disorder known as "conversion disorder."

Okay, so I admit it:
* I have Irritable Bowel Syndrome, Diverticulitis & Graves Disease.
* Due to internal problems, after my children were born,"relations" were virtually intolerable - until after surgery.
* The first 3 1/2 months of both pregnancies had me barfing my guts out nearly 24 hrs a day.
* I have vision problems, and issues with swallowing and speaking, as well as problems with balance and weakness.

I've never lost consciousness or had a seizure or lost my sense of taste, smell or sensation in any part of my body, etc., etc..

Finally, according to the reading I've done, once dx'd most people with Conversion Disorder usually get over it within a few weeks(?).

I must be have a very stubborn case, since the dr's have been referring to it for the last 6 months or more and I'm STILL not cured.

So, that's me - crazier than an outhouse rat sniffing methane...

I hope this answers your question(s).
Swallow

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Re: [MMGS] Re: Disability

2011-09-25T14:03:00.001-07:00

Yes, I agree with you Freida...We paid in and worked for everything we get knowone is doing us a favor it is ours!

Marsha

You want to know what living life to the fullest actually is?
It's waking up on a Monday morning with no complaints.
It's knowing you always deserve to laugh.
It's doing what feels right no matter what.
It's doing what you want to, no matter how stupid you look.
It's about being yourself, because no one can tell you you're doing it wrong.

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

From: Freida Lewis

To: maddysmgsupport@yahoogroups.com

Sent: Sunday, September 25, 2011 9:22 AM

Subject: [MMGS] Re: Disability

I was already on oxygen and had letters from my pulmonologist and my family doctor that I was unable to work, and I was still turned down the first time. But once I got a lawyer, I got it in six weeks without a hearing. I was qualified just two months after I was eligible to start, so it ended up being a pretty fast process. My got my teacher disability approved in a week...only time I've ever seen the State Education Department be efficient! God really took care of me...there was a month waiting period for teacher disability, and I had enough sick days to cover that month. The stress of dealing with the Social Security office is enough to kill a well person! They act like they are having to pay it out of their own pockets! Hello....I worked from the time I was 17 until I was 55, I earned anything I get!

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[MMGS] "Conversion Disorder" for Alice

2011-09-25T11:51:00.001-07:00

Hi Alice,
Rather than muddy the waters of "I'm a Sombody", I thought I'd start a new topic.

After filling out a questionnaire with approx 160 True/False choices, the scoring showed that I had a very high rate of Hypochondria and something else (can't remember what it was).

I was sent to a psychiatrist who asked all sorts of questions about my childhood and current family situation, etc.

He determined that there were no boundaries between adult & child in my home (my mother treated me as her confidante, so people wouldn't know her business).

Being the eldest, I was expected to step into my mothers shoes (she has Lupus and my father is a Doofus). Add to that the fact that I was molested for approx 7 yrs by a great uncle (whom after 20 yrs, I hope is STILL burning in Hell), that's when the TRUE picture came out!

I have Conversion Disorder!

Conversion Disorder, as was explained to me is when the only acceptable way to get positive attention is by taking psychological problems and turning them into a physical illness. It was also quickly pointed out that one may have both Conversion Disorder AND another disorder (i.e. MG, MS, etc), because we are so focused on what's happening with our bodies.

Strange thing is that I don't have many of the symptoms associated with the "illness". For instance, in order to be dx'd with Conversion Disorder, I have to meet at least 4 criteria from the list below:

A history of pain affecting at least four different parts or functions of the body. Examples include headaches, back, joint, chest or abdominal pain, or pain during menstruation or sexual intercourse for which there is no known cause.

A history of at least two gastrointestinal symptoms, such as nausea, bloating, vomiting, diarrhea, or food intolerance for which there is no known cause.

There must be a history of at least one sexual or reproductive symptom, such as lack of interest in sex, problems achieving erection or ejaculation, irregular menstrual periods, excessive menstrual bleeding, or vomiting throughout pregnancy for which there is no known cause.

One symptom must mimic a neurological condition. Examples include weakness, paralysis, problems with balance or coordination, seizures, hallucinations , loss of sensations such as touch, seeing, hearing, tasting, smellingor difficulty swallowing or speaking, or amnesia and loss of consciousness. Pseudo-neurologic symptoms like these are the primary characteristics of another somatoform disorder known as "conversion disorder."

Okay, so I admit it:
* I have Irritable Bowel Syndrome, Diverticulitis & Graves Disease.
* Due to internal problems, after my children were born,"relations" were virtually intolerable - until after surgery.
* The first 3 1/2 months of both pregnancies had me barfing my guts out nearly 24 hrs a day.
* I have vision problems, and issues with swallowing and speaking, as well as problems with balance and weakness.

I've never lost consciousness or had a seizure or lost my sense of taste, smell or sensation in any part of my body, etc., etc..

Finally, according to the reading I've done, once dx'd most people with Conversion Disorder usually get over it within a few weeks(?).

I must be have a very stubborn case, since the dr's have been referring to it for the last 6 months or more and I'm STILL not cured.

So, that's me - crazier than an outhouse rat sniffing methane...

I hope this answers your question(s).
Swallow

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Re: [MMGS] Re: I'M A SOMEBODY!/Swallow

2011-09-25T09:18:00.000-07:00

I have low thyroid thing too and it seems like I go through lots of ups and downs on my thyroid level especially since I have been dx with MG. Last year I had my 6month check and my level was 13.5 which means I was not getting enough. So the doctor increased my dose. Then when I went back for a 3 mo check, it was worse at 17. Tell me how that happens! But then she raised it again and the next 3 mo check, things were normal. Don't ask me why this happened. I didn't change anything else. It is important to not take the synthroid with some other pills. And it should be taken on an empty stomach preferably a half hour wait before you eat. Anyways I think it is just something that has to be watched, monitored, closely. It is hard to tell if you are tired because of the MG or because of the low thyroid or at least it is for me. I always thought my tiredness was just because of the thyroid issues before I was dx'd with MG.

Good luck, swallow

Janet

On Sep 24, 2011, at 12:25 PM, "swallow_stal" <swallow_stal@yahoo.ca> wrote:

Hi Michelle,

Thanks, I hope they can figure this out as well. Although, I have this feeling that instead of eating 6 small meals per day, I may be dividing my pills into similar groups - and there'll be no room for food on the schedule!

If the last go round was any indicator, I'll be accused of not taking any synthroid at all - according to my neuro. All they need point to is the dx of "Conversion Disorder" and the case will be solved.

Swallow

--- In maddysmgsupport@yahoogroups.com, Michelle Herd <emtsrhot@...> wrote:
>
> Swallow i hope they can figure out what is causing all this and you get some answers soon like.
> Â
> Michelle
> Â

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Re: [MMGS] Re: I'M A SOMEBODY!/Swallow

2011-09-25T07:26:00.001-07:00

my psychiatrist says it is almost if not more rare than paraneoplastic disease
and much more rare than MG and involves paralysis of a limb and no one with a
sense of humor usually EVer has it and he HAtEs when neurologists throw it around
for movement disorders that they don't understand, nor do htey understand the full
implications of what he calls idioatric reactions to the very drugs that supposdly help us
and the damage they do to the very nerve endings they treat

interesting, no?

A

On Sun, Sep 25, 2011 at 9:12 AM, Freida Lewis <flewis@scottsboro.org> wrote:

Swallow, don't doctors' comments like this almost make you wish they had to deal with a "conversion disorder?"

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[MMGS] Re: Disability

2011-09-25T06:30:00.001-07:00

I was told that my education would hurt me about getting my disability because it made me more likely to be able to do something besides teaching...who would hire a 55 year old woman who can't talk but a few minutes at a time, can't sit up without propping up, can't stand more than 5 minutes without looking like a drunk, can't breath without gasping, and on foggy days can't remember anything? The doctors don't see us on those days we can't get to the bathroom without holding on and have to rest before stepping out of the shower. I have very short hair because I can't hold a hair dryer long enough to dry it. I really felt "disabled" last night. I felt like cooking supper. Everything was going fine until something burning on the stove "eye" set off the smoke detector. By the time I had to keep waving a towel to make it stay off, I was done for the night. I barely had the strength to eat and couldn't wash dishes. And yesterday was a good day for me!

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[MMGS] Re: Disability

2011-09-25T06:22:00.001-07:00

I was already on oxygen and had letters from my pulmonologist and my family doctor that I was unable to work, and I was still turned down the first time. But once I got a lawyer, I got it in six weeks without a hearing. I was qualified just two months after I was eligible to start, so it ended up being a pretty fast process. My got my teacher disability approved in a week...only time I've ever seen the State Education Department be efficient! God really took care of me...there was a month waiting period for teacher disability, and I had enough sick days to cover that month. The stress of dealing with the Social Security office is enough to kill a well person! They act like they are having to pay it out of their own pockets! Hello....I worked from the time I was 17 until I was 55, I earned anything I get!

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[MMGS] Re: I'M A SOMEBODY!/Swallow

2011-09-25T06:12:00.001-07:00

Swallow, don't doctors' comments like this almost make you wish they had to deal with a "conversion disorder?"

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Re: [MMGS] Re: Disability

2011-09-25T05:45:00.000-07:00

well duh!!!! You have MG – some days yes you are within normal limits (at times) BUT what about the times you don't have it??? and that can't be predicted.....

From: teachmom67@aol.com

Sent: Sunday, September 25, 2011 12:11 AM

To: Marsha Pulliam ; maddysmgsupport@yahoogroups.com

Subject: Re: [MMGS] Re: Disability

I guess one of the problems is that my neurologist has written that I have muscle strength within normal range at times. (upon resting)

Amy

Every flower that has ever bloomed went through a whole lot of dirt to get there!

----- Reply message -----
From: "Marsha Pulliam" <mkpull@setel.com>
Date: Sat, Sep 24, 2011 4:01 pm
Subject: [MMGS] Re: Disability
To: <maddysmgsupport@yahoogroups.com>

well if she is any lawyer at all she can do that! I didn't need a lawyer the medical people talked to me from Social Secuirty over the phone.

I was approved that day.

Marsha

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

From: teachmom67@aol.com

To: teachmom67@aol.com ; Alice James ; maddysmgsupport@yahoogroups.com

Sent: Saturday, September 24, 2011 1:54 AM

Subject: Re: [MMGS] Re: Disability

My lawyer said that if they can somehow think up any job that they might think I could do 40 hours a week no matter how low the pay, then I would not be approved. She is going to try to prove that the MG along with the mental health stuff make it impossible for me to work.

Amy

Every flower that has ever bloomed went through a whole lot of dirt to get there!

----- Reply message -----
From: "teachmom67@aol.com" <teachmom67@aol.com>
Date: Sat, Sep 24, 2011 12:46 am
Subject: [MMGS] Re: Disability
To: "Alice James" <ali.james011@gmail.com>, <maddysmgsupport@yahoogroups.com>

I have waited not quite two and a half years... I just have too much riding on this!

Amy

Every flower that has ever bloomed went through a whole lot of dirt to get there!

----- Reply message -----
From: "Alice James" <ali.james011@gmail.com>
Date: Fri, Sep 23, 2011 7:47 pm
Subject: [MMGS] Re: Disability
To: <maddysmgsupport@yahoogroups.com>

That's right. Don't give up!! Just keep trying.
Alice

On Fri, Sep 23, 2011 at 5:21 PM, Freida Lewis <flewis@scottsboro.org> wrote:

Amy, I truly believe you will get it this time. I was turned down the first time. I got a lawyer, and he prepared me that it would take 18 months to 2 years to come before a judge. Six weeks later I got my favorable decision. You are in my prayers!

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Re: [MMGS] I'M A SOMEBODY!

2011-09-25T05:39:00.001-07:00

or a snow globe or other musical thing. lol I hear ya.

He's better... He got bit by a spider this week – one of those big camel spiders they have over there. But he's doing great.....

thanks for asking.

From: Alice James

Sent: Saturday, September 24, 2011 10:54 PM

To: maddysmgsupport@yahoogroups.com

Subject: Re: [MMGS] I'M A SOMEBODY!

HI
I have no idea how you can stand having a son in Iraq- and he's already been hurt!! How is he by the way?
I am a baby. A great big baby.
I use nightlights!!
Maybe I'll get a musical teddy bear! Now that's regressing.

Love
Alice

On Sat, Sep 24, 2011 at 5:46 PM, Sandy Keys <mulekeys@live.com> wrote:

oh no!!! You may just have to stow away on their flight!!!!!

My son is in Iraq right now – so I understand about missing them...

I'd get me one of those lights that shine on the ceiling.... or something.....

or yes – a fish – I have to have something in the house with me or I "imagine" things. yes, I'm a baby!!!

I hope it gets better for you soon.... At least you know he's at a good place – that's important.

From: Alice James

Sent: Saturday, September 24, 2011 5:20 PM

To: maddysmgsupport@yahoogroups.com

Subject: Re: [MMGS] I'M A SOMEBODY!

Thank you, Sandy
i got through the first few weeks okay, relieved actually, because I was feeling physically so awful. I just had sharp twinges. But now-- I even went to look at one of those
blue fish that sort of hang in a fishbowl like a wet sock....they must move at some point.
Hard with my younger son, wife and my only grandson leaving for 3 yrs in Australia soon. Unless I just frigging park myself in a trailer in the back yard! I might! Let them evict me. HA

love
A

On Sat, Sep 24, 2011 at 12:03 PM, Sandy Keys <mulekeys@live.com> wrote:

I wish you could have kept your baby. I'm so sorry....

Sandy

From: Alice James

Sent: Saturday, September 24, 2011 8:48 AM

To: maddysmgsupport@yahoogroups.com

Subject: Re: [MMGS] I'M A SOMEBODY!

well i have intermittent bouts of SPASTICITY. so I can't even be a Rag Doll right.
This is crushing news.

Honestly I think I would lose my m ind without this group. Please don't stop writing in, guys. I got too weak to care for my dog and finally had to give her away. apparently she is very happy. but her owner is in grief. you can FEEL the energy of an animate
feeling being in the house. Now that's gone....

love
Alice

On Fri, Sep 23, 2011 at 7:33 PM, Sandy Keys <mulekeys@live.com> wrote:

Hey, I saw a website from the UK that calls MG the Rag Doll disease... like Raggedy Ann.... Hmmmm

From: swallow_stal

Sent: Friday, September 23, 2011 5:59 PM

To: maddysmgsupport@yahoogroups.com

Subject: [MMGS] I'M A SOMEBODY!

Hey All,
Had my physical yesterday. Lots of tests.

Anyways, I just got a call my my GP's nurse who said the dr wants to see me ASAP and what time is good for me(?). Keeping in mind that this is the same nurse who is usually grouchier than all get out, I was both shocked and amazed.

The nurse said my creatinine levels were just this side of kidney failure and my thyroid level was at 16.5 (high normal is supposedly 5?). On top of all this sudden chatty sweetness and light, she told me to rest all weekend???

I'm pretty sure the high creatinine levels are probably a direct result of the 12 hour fast prior to my blood test, on top of just getting over a rotten cold/flu. So, this weekend, I'm going to drink LOTS of fluids.

My thyroid is level is another matter. My spouse makes up my pill concoctions every day. So, either he's trying to bump me off or maybe one medication is reducing the efficacy of the synthroid? Geez, when I tell him this, he's going FLIP OUT!

The last time I had major thyroid problems, it was attributed to my taking magnesium for muscle spasms - but I wasn't spacing the pills out. At least that's what the endocrinologist said. Of course, my neuro said I wasn't taking my meds at all.... Sure, like I don't want to have any energy and I want to gain weight and I want to look like a slack jawed goof!

I talked to my GP re: Conversion Disorder. For instance, was the leaking Bakers Cyst behind my knee cap a sign of this disorder, or is my Raggedy Ann shaped body a sign of this disorder? She didn't think so - on both counts.

Then again, what do I know? I'm NUTS anyways.
Swallow

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Re: [MMGS] Re: Disability

2011-09-25T05:32:00.001-07:00

Re the think up any job you can do, yes my disability application person said that.
then i had to appeal that decision. And finally won. Took 16 months.

alice

On Sun, Sep 25, 2011 at 8:24 AM, Lorraine Stevens <ludstevens91@aol.com> wrote:

Ohhh Boy Amy .. Most do that's MG , maybe you need a new one who gets it !!

Lorraine Ludwico Stevens

On Sep 25, 2011, at 12:11 AM, "teachmom67@aol.com" <teachmom67@aol.com> wrote:

I guess one of the problems is that my neurologist has written that I have muscle strength within normal range at times. (upon resting)

Amy

Every flower that has ever bloomed went through a whole lot of dirt to get there!

----- Reply message -----
From: "Marsha Pulliam" <mkpull@setel.com>
Date: Sat, Sep 24, 2011 4:01 pm
Subject: [MMGS] Re: Disability
To: <maddysmgsupport@yahoogroups.com>

well if she is any lawyer at all she can do that! I didn't need a lawyer the medical people talked to me from Social Secuirty over the phone.

I was approved that day.

Marsha

You want to know what living life to the fullest actually is?
It's waking up on a Monday morning with no complaints.
It's knowing you always deserve to laugh.
It's doing what feels right no matter what.
It's doing what you want to, no matter how stupid you look.
It's about being yourself, because no one can tell you you're doing it wrong.

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

From: teachmom67@aol.com

To: teachmom67@aol.com ; Alice James ; maddysmgsupport@yahoogroups.com

Sent: Saturday, September 24, 2011 1:54 AM

Subject: Re: [MMGS] Re: Disability

My lawyer said that if they can somehow think up any job that they might think I could do 40 hours a week no matter how low the pay, then I would not be approved. She is going to try to prove that the MG along with the mental health stuff make it impossible for me to work.

Amy

Every flower that has ever bloomed went through a whole lot of dirt to get there!

----- Reply message -----
From: "teachmom67@aol.com" <teachmom67@aol.com>
Date: Sat, Sep 24, 2011 12:46 am
Subject: [MMGS] Re: Disability
To: "Alice James" <ali.james011@gmail.com>, <maddysmgsupport@yahoogroups.com>

I have waited not quite two and a half years... I just have too much riding on this!

Amy

Every flower that has ever bloomed went through a whole lot of dirt to get there!

----- Reply message -----
From: "Alice James" <ali.james011@gmail.com>
Date: Fri, Sep 23, 2011 7:47 pm
Subject: [MMGS] Re: Disability
To: <maddysmgsupport@yahoogroups.com>

That's right. Don't give up!! Just keep trying.
Alice

On Fri, Sep 23, 2011 at 5:21 PM, Freida Lewis <flewis@scottsboro.org> wrote:

Amy, I truly believe you will get it this time. I was turned down the first time. I got a lawyer, and he prepared me that it would take 18 months to 2 years to come before a judge. Six weeks later I got my favorable decision. You are in my prayers!

~-|**|PrettyH

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Re: [MMGS] Re: Disability

2011-09-25T05:24:00.001-07:00

Ohhh Boy Amy .. Most do that's MG , maybe you need a new one who gets it !!

Lorraine Ludwico Stevens

On Sep 25, 2011, at 12:11 AM, "teachmom67@aol.com" <teachmom67@aol.com> wrote:

I guess one of the problems is that my neurologist has written that I have muscle strength within normal range at times. (upon resting)

Amy

Every flower that has ever bloomed went through a whole lot of dirt to get there!

----- Reply message -----
From: "Marsha Pulliam" <mkpull@setel.com>
Date: Sat, Sep 24, 2011 4:01 pm
Subject: [MMGS] Re: Disability
To: <maddysmgsupport@yahoogroups.com>

well if she is any lawyer at all she can do that! I didn't need a lawyer the medical people talked to me from Social Secuirty over the phone.

I was approved that day.

Marsha

You want to know what living life to the fullest actually is?
It's waking up on a Monday morning with no complaints.
It's knowing you always deserve to laugh.
It's doing what feels right no matter what.
It's doing what you want to, no matter how stupid you look.
It's about being yourself, because no one can tell you you're doing it wrong.

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

From: teachmom67@aol.com

To: teachmom67@aol.com ; Alice James ; maddysmgsupport@yahoogroups.com

Sent: Saturday, September 24, 2011 1:54 AM

Subject: Re: [MMGS] Re: Disability

My lawyer said that if they can somehow think up any job that they might think I could do 40 hours a week no matter how low the pay, then I would not be approved. She is going to try to prove that the MG along with the mental health stuff make it impossible for me to work.

Amy

Every flower that has ever bloomed went through a whole lot of dirt to get there!

----- Reply message -----
From: "teachmom67@aol.com" <teachmom67@aol.com>
Date: Sat, Sep 24, 2011 12:46 am
Subject: [MMGS] Re: Disability
To: "Alice James" <ali.james011@gmail.com>, <maddysmgsupport@yahoogroups.com>

I have waited not quite two and a half years... I just have too much riding on this!

Amy

Every flower that has ever bloomed went through a whole lot of dirt to get there!

----- Reply message -----
From: "Alice James" <ali.james011@gmail.com>
Date: Fri, Sep 23, 2011 7:47 pm
Subject: [MMGS] Re: Disability
To: <maddysmgsupport@yahoogroups.com>

That's right. Don't give up!! Just keep trying.
Alice

On Fri, Sep 23, 2011 at 5:21 PM, Freida Lewis <flewis@scottsboro.org> wrote:

Amy, I truly believe you will get it this time. I was turned down the first time. I got a lawyer, and he prepared me that it would take 18 months to 2 years to come before a judge. Six weeks later I got my favorable decision. You are in my prayers!

~-|**|PrettyH

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Re: [MMGS] Re: Disability

2011-09-25T05:17:00.000-07:00

OH MG! (as previously explained - in kid text it is OMG.)
I HATE when they do this. I have bursts of gripping strength too. It is called adrenaline.
What he is supposed to write about is how you are able to manage daily living tasks.
Like- has trouble with dishes, laundry, climbing more than three steps, cannot vacuum,
has trouble with showering or wash floors...Must rest at 2 hour intervals, vision is blurred blah blah blah
The kind of stuff an OT eval would put. What a bozo. Call him at once and get an in-home OT eval!!! If he can't figure it out.
So sorry about neuros. I don't know where they dropped in from....

alice

On Sun, Sep 25, 2011 at 12:11 AM, teachmom67@aol.com <teachmom67@aol.com> wrote:

I guess one of the problems is that my neurologist has written that I have muscle strength within normal range at times. (upon resting)

Amy

Every flower that has ever bloomed went through a whole lot of dirt to get there!

----- Reply message -----
From: "Marsha Pulliam" <mkpull@setel.com>
Date: Sat, Sep 24, 2011 4:01 pm
Subject: [MMGS] Re: Disability
To: <maddysmgsupport@yahoogroups.com>

well if she is any lawyer at all she can do that! I didn't need a lawyer the medical people talked to me from Social Secuirty over the phone.

I was approved that day.

Marsha

You want to know what living life to the fullest actually is?
It's waking up on a Monday morning with no complaints.
It's knowing you always deserve to laugh.
It's doing what feels right no matter what.
It's doing what you want to, no matter how stupid you look.
It's about being yourself, because no one can tell you you're doing it wrong.

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

From: teachmom67@aol.com

To: teachmom67@aol.com ; Alice James ; maddysmgsupport@yahoogroups.com

Sent: Saturday, September 24, 2011 1:54 AM

Subject: Re: [MMGS] Re: Disability

My lawyer said that if they can somehow think up any job that they might think I could do 40 hours a week no matter how low the pay, then I would not be approved. She is going to try to prove that the MG along with the mental health stuff make it impossible for me to work.

Amy

Every flower that has ever bloomed went through a whole lot of dirt to get there!

----- Reply message -----
From: "teachmom67@aol.com" <teachmom67@aol.com>
Date: Sat, Sep 24, 2011 12:46 am
Subject: [MMGS] Re: Disability
To: "Alice James" <ali.james011@gmail.com>, <maddysmgsupport@yahoogroups.com>

I have waited not quite two and a half years... I just have too much riding on this!

Amy

Every flower that has ever bloomed went through a whole lot of dirt to get there!

----- Reply message -----
From: "Alice James" <ali.james011@gmail.com>
Date: Fri, Sep 23, 2011 7:47 pm
Subject: [MMGS] Re: Disability
To: <maddysmgsupport@yahoogroups.com>

That's right. Don't give up!! Just keep trying.
Alice

On Fri, Sep 23, 2011 at 5:21 PM, Freida Lewis <flewis@scottsboro.org> wrote:

Amy, I truly believe you will get it this time. I was turned down the first time. I got a lawyer, and he prepared me that it would take 18 months to 2 years to come before a judge. Six weeks later I got my favorable decision. You are in my prayers!

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Re: [MMGS] Re: I'M A SOMEBODY!/Swallow

2011-09-25T05:04:00.001-07:00

OH MG! (actually a version of Oh My God, OMG?)--cool, huh?

I can't wait to hear this discussion!!! Go for it, Swallow!! I'd also like to know

love
Alice

On Sun, Sep 25, 2011 at 1:03 AM, <smd@bright.net> wrote:

Swallow Please excuse me for asking what probably to everyone else here will turn out to be a dumb question but can you tell me what You mean by a Conversion Disorder, Please? I Googled it and the definitions that came back were all over the place.

Thanks And I'll Put You At The Top Of Tonights Prayer List.

S

At 03:25 PM 9/24/2011 Saturday, you wrote:

Hi Michelle,

Thanks, I hope they can figure this out as well. Although, I have this feeling that instead of eating 6 small meals per day, I may be dividing my pills into similar groups - and there'll be no room for food on the schedule!

If the last go round was any indicator, I'll be accused of not taking any synthroid at all - according to my neuro. All they need point to is the dx of "Conversion Disorder" and the case will be solved.

Swallow

--- In maddysmgsupport@yahoogroups.com, Michelle Herd <emtsrhot@...> wrote:
>
> Swallow i hope they can figure out what is causing all this and you get some answers soon like.
> Â
> Michelle
> Â

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