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RE: [SMAFriends] Siblings/Surgery/Arm Pain/Angie

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I'm not the authority on SMA medical issues...but...I do know that beck had

the same thing and her dr. explained her rapid HR as being in relation to her

shallower, more frequent breaths and also the heart muscle might need to

pump more frequently to circulate properly. (standing and walking improves

circulation) I don't know if that is really a valid explanation or him just

trying to stop beck from asking...she was quite concerned about how rapid her

HR

was the past several years and started seeing a cardiologist...and that's how

he explained it. said he has seen it before (rapid HR) in similar

situations and also said her heart was fine.

are you type II?

tj

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Meg, the one big side effect of too much Mestinon is weakness / tiredness. I

had to shuffle the pill dosage around until I decided that 30mg is enough to

kick start me in the mornings. If I know in advance that I will be having a

busy day I will take another 30mg about 8hrs after the first or six hours

before bed just as long as there is 6 hours between the two pills.

Be sure to eat something or take an Ensure or some soft food within an hour of

taking the Mestinon too so it will settle your tummy.

Also, being put under takes a toll on the body no matter what part got

operated on. Keep feeding or nibble on small foods throughout the day. Worry

about scheduled meals after you recupe more; especially drink as much juice

or water too. Some people dehydrate after being under; I did.

As far as your face looking punched around, it has ... your teeth have roots

and maybe the tissue around them flared up a bit causing blood to rush in to

repair it ..... how bruising can form. Your dilated pupils??? Not sure about

that. You may need to see an eye doctor.

Back down on the Mestinon. Stay on 30mg for a week or two before uping the

dosage. Small, slow steps okay?

Angie

On Tuesday 31 October 2006 15:47, Meg Witkowski wrote:

> Another plea for helpÂ…

>

>

>

> So, I survived the dental surgery. All 21 teeth gone! It was more

> painful than I thought it would be. Then I woke up in the recovery

> room, with a tube down my throat. Apparently, my breathing wasnÂ’t so

> good during surgery. I went home the same day. It was a bad

> experience, but IÂ’m glad its done with. Now, I have a problem. I

> keep getting dizzy. My gums are healing fine, I am off the

> antibiotics, but I am dizzy. Its worst when I go from a laying down

> position to sitting up. I am assuming I lost lots of blood and my

> anemia is just worse. But I havenÂ’t gone to my doctor yet. I havenÂ’t

> left the house since the surgery, except for my follow up with the

> surgeon.

>

>

>

> In addition to the dizziness, my eyes are dark and pupils very

> dilated. I look like someone hit me in the face with a shovel. Feel

> like that too, my gums are still sore.

>

>

>

> In addition to the above addition, my arms feel weaker and hurt more.

> Could that be caused by me being under full anesthesia during surgery?

> But why would having my teeth removed make my whole body feel so damn

> weak?

>

>

>

> Oh, the Mestinon has stopped working, it seems. I went from taking

> half a pill (30mg) once a day to taking 1 (60mg) pill 3 times a day.

> Angie, what should I do? Why would that large dose not work for me

> anymore? What the hell is wrong with me??? :-(

>

> I’m going to take 1 and ½ and see if it helps. I can’t take this, my

> arms are killing me. Perfect timing too, just when I find a job which

> requires typing, my arms are dying out on me. IÂ’m scared. :-(

>

>

>

> And about the torturous siblings, my younger brother (19 yr. old), had

> been teasing me about my current toothless condition, especially since

> its Halloween! However, he actually helped me yesterday. I was

> eating dinner, on a large ceramic plate. I didnÂ’t like it and tried

> to take it back to the kitchen myself. I underestimated my arm

> weakness. The plate started falling down my knees, as I was

> struggling to hold it with one hand, with the food flowing down into

> my hand, then my joystick moved away and it took me forever to bring

> it back so I could get myself closer to the phone. I paged him. So

> he came from his room and grabbed the plate and saved me. HeÂ’s also

> in a chair and has SMA-II, just like me. He keeps telling me not to

> try lifting heavy stuff myself, but I do it anyway. Despite him

> annoying the crap out of me on a daily basis, I love him to death.

>

>

>

> Then I went to my bathroom to wash my hands off from the food, and I

> looked up and saw myself in the mirror, looking sick and my mouth dark

> and empty, and I broke down crying. I felt so worthless and pathetic.

>

> :-(

>

> The arm pain and weakness is killing me. Help! Anyone, just help me!

>

>

>

>

> God Bless!

>

> ~ Meg ~

>

> ( <http://www.myspace.com/sexytear> http://www.myspace.com/sexytear)

>

>

>

>

>

>

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Dizzy-I would get someone to check you blood pressure when you feel

dizzy. You many be having bouts of low bp.

Arms hurting-many while you were unconscious, someone moved you by your

arms and that's why you are sore. Just a thought.

Almost dropping things that are too heavy-don't try to pick up things

that are too heavy. :P Umm, paper plates, cups, etc.

Good luck. I hope to feel better. Are you going to get dentures?

L

Meg Witkowski wrote:

> Another plea for help…

>

> So, I survived the dental surgery. All 21 teeth gone! It was more

> painful than I thought it would be. Then I woke up in the recovery

> room, with a tube down my throat. Apparently, my breathing wasn’t so

> good during surgery. I went home the same day. It was a bad

> experience, but I’m glad its done with. Now, I have a problem. I

> keep getting dizzy. My gums are healing fine, I am off the

> antibiotics, but I am dizzy. Its worst when I go from a laying down

> position to sitting up. I am assuming I lost lots of blood and my

> anemia is just worse. But I haven’t gone to my doctor yet. I haven’t

> left the house since the surgery, except for my follow up with the

> surgeon.

>

> In addition to the dizziness, my eyes are dark and pupils very

> dilated. I look like someone hit me in the face with a shovel. Feel

> like that too, my gums are still sore.

>

> In addition to the above addition, my arms feel weaker and hurt more.

> Could that be caused by me being under full anesthesia during surgery?

> But why would having my teeth removed make my whole body feel so damn

> weak?

>

> Oh, the Mestinon has stopped working, it seems. I went from taking

> half a pill (30mg) once a day to taking 1 (60mg) pill 3 times a day.

> Angie, what should I do? Why would that large dose not work for me

> anymore? What the hell is wrong with me??? :-(

>

> I’m going to take 1 and ½ and see if it helps. I can’t take this, my

> arms are killing me. Perfect timing too, just when I find a job which

> requires typing, my arms are dying out on me. I’m scared. :-(

>

> And about the torturous siblings, my younger brother (19 yr. old), had

> been teasing me about my current toothless condition, especially since

> its Halloween! However, he actually helped me yesterday. I was

> eating dinner, on a large ceramic plate. I didn’t like it and tried

> to take it back to the kitchen myself. I underestimated my arm

> weakness. The plate started falling down my knees, as I was

> struggling to hold it with one hand, with the food flowing down into

> my hand, then my joystick moved away and it took me forever to bring

> it back so I could get myself closer to the phone. I paged him. So

> he came from his room and grabbed the plate and saved me. He’s also

> in a chair and has SMA-II, just like me. He keeps telling me not to

> try lifting heavy stuff myself, but I do it anyway. Despite him

> annoying the crap out of me on a daily basis, I love him to death.

>

> Then I went to my bathroom to wash my hands off from the food, and I

> looked up and saw myself in the mirror, looking sick and my mouth dark

> and empty, and I broke down crying. I felt so worthless and pathetic.

> :-(

>

> The arm pain and weakness is killing me. Help! Anyone, just help me!

>

> God Bless!

>

> ~ Meg ~

>

> ( <http://www.myspace.com/sexytear <http://www.myspace.com/sexytear>>

> http://www.myspace.com/sexytear <http://www.myspace.com/sexytear>)

>

>

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ah yes checking bp, good idea. that is something my gp did check before

referring me on to ear specialist who had a 'dizzy clinic'.

linda

On 10/31/06, Those Two <those2@...> wrote:

>

> Dizzy-I would get someone to check you blood pressure when you feel

> dizzy. You many be having bouts of low bp.

>

> Arms hurting-many while you were unconscious, someone moved you by your

> arms and that's why you are sore. Just a thought.

>

> Almost dropping things that are too heavy-don't try to pick up things

> that are too heavy. :P Umm, paper plates, cups, etc.

>

> Good luck. I hope to feel better. Are you going to get dentures?

>

> L

>

>

>

> Meg Witkowski wrote:

>

> > Another plea for help…

> >

> > So, I survived the dental surgery. All 21 teeth gone! It was more

> > painful than I thought it would be. Then I woke up in the recovery

> > room, with a tube down my throat. Apparently, my breathing wasn't so

> > good during surgery. I went home the same day. It was a bad

> > experience, but I'm glad its done with. Now, I have a problem. I

> > keep getting dizzy. My gums are healing fine, I am off the

> > antibiotics, but I am dizzy. Its worst when I go from a laying down

> > position to sitting up. I am assuming I lost lots of blood and my

> > anemia is just worse. But I haven't gone to my doctor yet. I haven't

> > left the house since the surgery, except for my follow up with the

> > surgeon.

> >

> > In addition to the dizziness, my eyes are dark and pupils very

> > dilated. I look like someone hit me in the face with a shovel. Feel

> > like that too, my gums are still sore.

> >

> > In addition to the above addition, my arms feel weaker and hurt more.

> > Could that be caused by me being under full anesthesia during surgery?

> > But why would having my teeth removed make my whole body feel so damn

> > weak?

> >

> > Oh, the Mestinon has stopped working, it seems. I went from taking

> > half a pill (30mg) once a day to taking 1 (60mg) pill 3 times a day.

> > Angie, what should I do? Why would that large dose not work for me

> > anymore? What the hell is wrong with me??? :-(

> >

> > I'm going to take 1 and ½ and see if it helps. I can't take this, my

> > arms are killing me. Perfect timing too, just when I find a job which

> > requires typing, my arms are dying out on me. I'm scared. :-(

> >

> > And about the torturous siblings, my younger brother (19 yr. old), had

> > been teasing me about my current toothless condition, especially since

> > its Halloween! However, he actually helped me yesterday. I was

> > eating dinner, on a large ceramic plate. I didn't like it and tried

> > to take it back to the kitchen myself. I underestimated my arm

> > weakness. The plate started falling down my knees, as I was

> > struggling to hold it with one hand, with the food flowing down into

> > my hand, then my joystick moved away and it took me forever to bring

> > it back so I could get myself closer to the phone. I paged him. So

> > he came from his room and grabbed the plate and saved me. He's also

> > in a chair and has SMA-II, just like me. He keeps telling me not to

> > try lifting heavy stuff myself, but I do it anyway. Despite him

> > annoying the crap out of me on a daily basis, I love him to death.

> >

> > Then I went to my bathroom to wash my hands off from the food, and I

> > looked up and saw myself in the mirror, looking sick and my mouth dark

> > and empty, and I broke down crying. I felt so worthless and pathetic.

> > :-(

> >

> > The arm pain and weakness is killing me. Help! Anyone, just help me!

> >

> > God Bless!

> >

> > ~ Meg ~

> >

> > ( <http://www.myspace.com/sexytear <http://www.myspace.com/sexytear>>

> > http://www.myspace.com/sexytear <http://www.myspace.com/sexytear>)

> >

> >

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ah yes checking bp, good idea. that is something my gp did check before

referring me on to ear specialist who had a 'dizzy clinic'.

linda

On 10/31/06, Those Two <those2@...> wrote:

>

> Dizzy-I would get someone to check you blood pressure when you feel

> dizzy. You many be having bouts of low bp.

>

> Arms hurting-many while you were unconscious, someone moved you by your

> arms and that's why you are sore. Just a thought.

>

> Almost dropping things that are too heavy-don't try to pick up things

> that are too heavy. :P Umm, paper plates, cups, etc.

>

> Good luck. I hope to feel better. Are you going to get dentures?

>

> L

>

>

>

> Meg Witkowski wrote:

>

> > Another plea for help…

> >

> > So, I survived the dental surgery. All 21 teeth gone! It was more

> > painful than I thought it would be. Then I woke up in the recovery

> > room, with a tube down my throat. Apparently, my breathing wasn't so

> > good during surgery. I went home the same day. It was a bad

> > experience, but I'm glad its done with. Now, I have a problem. I

> > keep getting dizzy. My gums are healing fine, I am off the

> > antibiotics, but I am dizzy. Its worst when I go from a laying down

> > position to sitting up. I am assuming I lost lots of blood and my

> > anemia is just worse. But I haven't gone to my doctor yet. I haven't

> > left the house since the surgery, except for my follow up with the

> > surgeon.

> >

> > In addition to the dizziness, my eyes are dark and pupils very

> > dilated. I look like someone hit me in the face with a shovel. Feel

> > like that too, my gums are still sore.

> >

> > In addition to the above addition, my arms feel weaker and hurt more.

> > Could that be caused by me being under full anesthesia during surgery?

> > But why would having my teeth removed make my whole body feel so damn

> > weak?

> >

> > Oh, the Mestinon has stopped working, it seems. I went from taking

> > half a pill (30mg) once a day to taking 1 (60mg) pill 3 times a day.

> > Angie, what should I do? Why would that large dose not work for me

> > anymore? What the hell is wrong with me??? :-(

> >

> > I'm going to take 1 and ½ and see if it helps. I can't take this, my

> > arms are killing me. Perfect timing too, just when I find a job which

> > requires typing, my arms are dying out on me. I'm scared. :-(

> >

> > And about the torturous siblings, my younger brother (19 yr. old), had

> > been teasing me about my current toothless condition, especially since

> > its Halloween! However, he actually helped me yesterday. I was

> > eating dinner, on a large ceramic plate. I didn't like it and tried

> > to take it back to the kitchen myself. I underestimated my arm

> > weakness. The plate started falling down my knees, as I was

> > struggling to hold it with one hand, with the food flowing down into

> > my hand, then my joystick moved away and it took me forever to bring

> > it back so I could get myself closer to the phone. I paged him. So

> > he came from his room and grabbed the plate and saved me. He's also

> > in a chair and has SMA-II, just like me. He keeps telling me not to

> > try lifting heavy stuff myself, but I do it anyway. Despite him

> > annoying the crap out of me on a daily basis, I love him to death.

> >

> > Then I went to my bathroom to wash my hands off from the food, and I

> > looked up and saw myself in the mirror, looking sick and my mouth dark

> > and empty, and I broke down crying. I felt so worthless and pathetic.

> > :-(

> >

> > The arm pain and weakness is killing me. Help! Anyone, just help me!

> >

> > God Bless!

> >

> > ~ Meg ~

> >

> > ( <http://www.myspace.com/sexytear <http://www.myspace.com/sexytear>>

> > http://www.myspace.com/sexytear <http://www.myspace.com/sexytear>)

> >

> >

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Meg,

I'm so sorry about all the pain and weakness. The only thing I can think of

is you just aren't recovered fully from the surgery. Pain can also be

exhausting and the added mouth pain prolly isn't helping. About your low bp

and

high hr, I wonder if your heart is trying to compensate for the low bp. Like

I think low bp can mean low blood volume, so your heart is trying to produce

more blood. Am I making sense?

Feel better Meg!

Love,

Kimi

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My mom, who is an RN, checked my BP a few times after my dizzy spells,

and it was normal. My BP is usually low, while my pulse is high.

What does that mean? Even my doctor can't answer that! I feel like a

medical mystery freak. :(

God Bless!

~ Meg ~

(http://www.myspace.com/sexytear)

(http://360./pink-tulipameritech (DOT) net)

Re: [sMAFriends] Siblings/Surgery/Arm Pain/Angie

ah yes checking bp, good idea. that is something my gp did check

before

referring me on to ear specialist who had a 'dizzy clinic'.

linda

On 10/31/06, Those Two <those2@...> wrote:

>

> Dizzy-I would get someone to check you blood pressure when you feel

> dizzy. You many be having bouts of low bp.

>

> Arms hurting-many while you were unconscious, someone moved you by

your

> arms and that's why you are sore. Just a thought.

>

> Almost dropping things that are too heavy-don't try to pick up

things

> that are too heavy. :P Umm, paper plates, cups, etc.

>

> Good luck. I hope to feel better. Are you going to get dentures?

>

> L

>

>

>

> Meg Witkowski wrote:

>

> > Another plea for help…

> >

> > So, I survived the dental surgery. All 21 teeth gone! It was more

> > painful than I thought it would be. Then I woke up in the recovery

> > room, with a tube down my throat. Apparently, my breathing wasn't

so

> > good during surgery. I went home the same day. It was a bad

> > experience, but I'm glad its done with. Now, I have a problem. I

> > keep getting dizzy. My gums are healing fine, I am off the

> > antibiotics, but I am dizzy. Its worst when I go from a laying

down

> > position to sitting up. I am assuming I lost lots of blood and my

> > anemia is just worse. But I haven't gone to my doctor yet. I

haven't

> > left the house since the surgery, except for my follow up with the

> > surgeon.

> >

> > In addition to the dizziness, my eyes are dark and pupils very

> > dilated. I look like someone hit me in the face with a shovel.

Feel

> > like that too, my gums are still sore.

> >

> > In addition to the above addition, my arms feel weaker and hurt

more.

> > Could that be caused by me being under full anesthesia during

surgery?

> > But why would having my teeth removed make my whole body feel so

damn

> > weak?

> >

> > Oh, the Mestinon has stopped working, it seems. I went from taking

> > half a pill (30mg) once a day to taking 1 (60mg) pill 3 times a

day.

> > Angie, what should I do? Why would that large dose not work for me

> > anymore? What the hell is wrong with me??? :-(

> >

> > I'm going to take 1 and ½ and see if it helps. I can't take this,

my

> > arms are killing me. Perfect timing too, just when I find a job

which

> > requires typing, my arms are dying out on me. I'm scared. :-(

> >

> > And about the torturous siblings, my younger brother (19 yr. old),

had

> > been teasing me about my current toothless condition, especially

since

> > its Halloween! However, he actually helped me yesterday. I was

> > eating dinner, on a large ceramic plate. I didn't like it and

tried

> > to take it back to the kitchen myself. I underestimated my arm

> > weakness. The plate started falling down my knees, as I was

> > struggling to hold it with one hand, with the food flowing down

into

> > my hand, then my joystick moved away and it took me forever to

bring

> > it back so I could get myself closer to the phone. I paged him. So

> > he came from his room and grabbed the plate and saved me. He's

also

> > in a chair and has SMA-II, just like me. He keeps telling me not

to

> > try lifting heavy stuff myself, but I do it anyway. Despite him

> > annoying the crap out of me on a daily basis, I love him to death.

> >

> > Then I went to my bathroom to wash my hands off from the food, and

I

> > looked up and saw myself in the mirror, looking sick and my mouth

dark

> > and empty, and I broke down crying. I felt so worthless and

pathetic.

> > :-(

> >

> > The arm pain and weakness is killing me. Help! Anyone, just help

me!

> >

> > God Bless!

> >

> > ~ Meg ~

> >

> > ( <http://www.myspace.com/sexytear

<http://www.myspace.com/sexytear>>

> > http://www.myspace.com/sexytear <http://www.myspace.com/sexytear>)

> >

> >

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Sounds like good advice from Angie.

Angie wrote:

> Meg, the one big side effect of too much Mestinon is weakness /

> tiredness. I

> had to shuffle the pill dosage around until I decided that 30mg is

> enough to

> kick start me in the mornings. If I know in advance that I will be

> having a

> busy day I will take another 30mg about 8hrs after the first or six hours

> before bed just as long as there is 6 hours between the two pills.

>

> Be sure to eat something or take an Ensure or some soft food within an

> hour of

> taking the Mestinon too so it will settle your tummy.

>

> Also, being put under takes a toll on the body no matter what part got

> operated on. Keep feeding or nibble on small foods throughout the day.

> Worry

> about scheduled meals after you recupe more; especially drink as much

> juice

> or water too. Some people dehydrate after being under; I did.

>

> As far as your face looking punched around, it has ... your teeth have

> roots

> and maybe the tissue around them flared up a bit causing blood to rush

> in to

> repair it ..... how bruising can form. Your dilated pupils??? Not sure

> about

> that. You may need to see an eye doctor.

>

> Back down on the Mestinon. Stay on 30mg for a week or two before uping

> the

> dosage. Small, slow steps okay?

>

> Angie

>

> On Tuesday 31 October 2006 15:47, Meg Witkowski wrote:

> > Another plea for helpÂ…

> >

> >

> >

> > So, I survived the dental surgery. All 21 teeth gone! It was more

> > painful than I thought it would be. Then I woke up in the recovery

> > room, with a tube down my throat. Apparently, my breathing wasnÂ’t so

> > good during surgery. I went home the same day. It was a bad

> > experience, but IÂ’m glad its done with. Now, I have a problem. I

> > keep getting dizzy. My gums are healing fine, I am off the

> > antibiotics, but I am dizzy. Its worst when I go from a laying down

> > position to sitting up. I am assuming I lost lots of blood and my

> > anemia is just worse. But I havenÂ’t gone to my doctor yet. I havenÂ’t

> > left the house since the surgery, except for my follow up with the

> > surgeon.

> >

> >

> >

> > In addition to the dizziness, my eyes are dark and pupils very

> > dilated. I look like someone hit me in the face with a shovel. Feel

> > like that too, my gums are still sore.

> >

> >

> >

> > In addition to the above addition, my arms feel weaker and hurt more.

> > Could that be caused by me being under full anesthesia during surgery?

> > But why would having my teeth removed make my whole body feel so damn

> > weak?

> >

> >

> >

> > Oh, the Mestinon has stopped working, it seems. I went from taking

> > half a pill (30mg) once a day to taking 1 (60mg) pill 3 times a day.

> > Angie, what should I do? Why would that large dose not work for me

> > anymore? What the hell is wrong with me??? :-(

> >

> > I’m going to take 1 and ½ and see if it helps. I can’t take this, my

> > arms are killing me. Perfect timing too, just when I find a job which

> > requires typing, my arms are dying out on me. IÂ’m scared. :-(

> >

> >

> >

> > And about the torturous siblings, my younger brother (19 yr. old), had

> > been teasing me about my current toothless condition, especially since

> > its Halloween! However, he actually helped me yesterday. I was

> > eating dinner, on a large ceramic plate. I didnÂ’t like it and tried

> > to take it back to the kitchen myself. I underestimated my arm

> > weakness. The plate started falling down my knees, as I was

> > struggling to hold it with one hand, with the food flowing down into

> > my hand, then my joystick moved away and it took me forever to bring

> > it back so I could get myself closer to the phone. I paged him. So

> > he came from his room and grabbed the plate and saved me. HeÂ’s also

> > in a chair and has SMA-II, just like me. He keeps telling me not to

> > try lifting heavy stuff myself, but I do it anyway. Despite him

> > annoying the crap out of me on a daily basis, I love him to death.

> >

> >

> >

> > Then I went to my bathroom to wash my hands off from the food, and I

> > looked up and saw myself in the mirror, looking sick and my mouth dark

> > and empty, and I broke down crying. I felt so worthless and pathetic.

> >

> > :-(

> >

> > The arm pain and weakness is killing me. Help! Anyone, just help me!

> >

> >

> >

> >

> > God Bless!

> >

> > ~ Meg ~

> >

> > ( <http://www.myspace.com/sexytear

> <http://www.myspace.com/sexytear>> http://www.myspace.com/sexytear

> <http://www.myspace.com/sexytear>)

> >

> >

> >

> >

> >

> >

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I’m type 2. Yet, at my last visit to the MDA clinic, the doc said I

was either a high functioning type 2 or a low functioning type 3.

Maybe I’m just 2/3 of a person. :-(

God Bless!

~ Meg ~

( <http://www.myspace.com/sexytear> http://www.myspace.com/sexytear)

( <http://360./pink-tulipameritech (DOT) net>

http://360./pink-tulipameritech (DOT) net)

_____

From: [mailto: ]

On Behalf Of tstefonek@...

Sent: Tuesday, October 31, 2006 7:40 PM

Subject: Re: [sMAFriends] Siblings/Surgery/Arm Pain/Angie

I'm not the authority on SMA medical issues...but...I do know that

beck had

the same thing and her dr. explained her rapid HR as being in relation

to her

shallower, more frequent breaths and also the heart muscle might need

to

pump more frequently to circulate properly. (standing and walking

improves

circulation) I don't know if that is really a valid explanation or him

just

trying to stop beck from asking...she was quite concerned about how

rapid her HR

was the past several years and started seeing a cardiologist...and

that's how

he explained it. said he has seen it before (rapid HR) in similar

situations and also said her heart was fine.

are you type II?

tj

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