Re: update-questions-long

[Guest guest]

Adrienne

I am sorry that you are feeling so low. We think of you and we are there for

you.

Propafol damages the mitochondria so is not recommended for mito folks. That

might be why you are having a rough time coming out of it. When I had my

shoulder surgery, they used pancuronium and narcotics and something else.

These were approved by Dr. Cohen when the anethesiologist called him. You

might want to increase your CoQ10 and fluids until feeling better. It might

at least be worth trying.

You should continue with the process of getting SSI and/or SSDI. They almost

always reject you the first time. They hope you go away. Your denial letter

should have information with it as to how to procede. It might be worth the

battle, even if it is stressful at the moment. Be sure to indicate that mito

is a form of muscular dystrophy as that is something they have heard of.

Good luck with getting to where you want to be.

laurie

> From: moonchild62579@...

> Reply-To:

> Date: Sun, 28 Mar 2004 14:57:26 EST

> To:

> Subject: update-questions-long

>

> Hey guys,

> This has been a hard week on me. I just wanted to ask some stuff and let yall

> know how I'm doing. I'm having a hard time typing but have alot to say so

> think I will try. On Monday I had an EGD with esophogeal dilatation. They gave

> me

> propafol and fentanyl. (I cant take benzos like valium, ativan, and also

> versed cuz they provoke my seizures). I haven't really had probs with the

> propafol

> and fentanyl combo till my muscle biopsy but then it only caused my SAT rates

> to drop into the 80's and my heart rate go up really quickly. That only

> happened the first 10 mins of coming out of the anesthesia then I was fine.

> This

> was in December. Then I used the same combo for the urology tests they did in

> February- I was fine cept again my SAT rates dropped but not as much. This

> time

> though- less than a min coming out of the anesthesia I had 2 grand mal

> seizures first one lasted about 5 mins the other one less. I had an aura

> before them

> right when i was waking up so was able to warn them. They didnt know how to

> treat me so just doubled up on my seizure meds that day. They kept me a few

> hours longer than they first planned but didnt admit me. I got extra fluids

> too. I

> feel like I've been postictal ever since- I've had a migraine off and on

> since then, some mild stroke like symptoms, have been very ataxic these past

> few

> days along with worsened exercize intolerance. My gi and breathing probs seem

> to be worse too. Not sure if I contribute that to the rest or the dialation of

> my esophogus causing the reflux to come up more. The dr also said that Im

> having severe esophogeal spasms that he could see on the EGD, errosion at the

> bottom of my esophogus and of course undigested food showing my gastroparesis

> has

> gotten worse. I see him monday to find out what he wants to do now. He did

> mention that since I'm keeping my weight up that a feeding tube probably isnt

> necessary- I dont know how I'm keeping my weight up though- I cant eat much

> and I

> think it might be from bloating from the bowel dysmotility and also I have

> edema right now. I actually had gained 10 lbs recently, then I lose it again,

> goes back and forth. My abdominal pain has grown to its worse also- I just

> feel

> really awful. Then on Friday I learned that social security denied both my SSI

> and SSD claims. I had already fallen into a depression cuz of the events

> earlier this week and how I was feeling. Plus they are still worried my mom

> might

> have cancer and it seems that its gonna be hard to figure out if she does or

> not- thats another story. Then other than you guys and my mom- I have 3 close

> friends- my ex fiance, my best friend (both live in town) and a guy friend

> that

> lives an hour away. My ex fiance isnt much help anymore- hes got his own GF

> now and works 2 jobs, he never calls me, I was doing the calling, so i stopped

> finally. Now my best friend has stopped talking to me because of lies that

> were told to her about some stuff I said. She is now saying that karma is

> getting

> me- I dont know if I should talk with her anymore. Shes been under alot of

> stress but so have i. Then the only other person I really talk with is my

> friend

> who lives an hour away- I talk with him once a week and see him maybe once a

> month. Hes become busier with his own life though at least he seems to still

> care. The other people that are in my life are aquantances- friends of my best

> friend, seems they dont care enough to call though. I feel so alone. Other

> than you guys, its seems I only have my mom and friend that is out of town. Im

> starting to feel like a burden to my mom also- shes been talking about how she

> wishes so much that I dont have mito and is hoping the muscle biopsy is

> negative. Even if it is, doesnt mean i dont have mito. and then that would

> mean we

> still dont know the cause of everything. I think my mom wants to go into

> denial- she seems so overstressed. And she is really stressed (as am I) about

> disability- I lose my PPO insurance in 3 months- we dont know what I will do

> w/o

> that if I dont get disability. There are some alternatives, but just as long

> and

> stressful of a process. I feel just way too overwhelmed with all this. Then my

> local neuro giving up on me, I no longer really have a neuro- just my

> geneticists in DC that I'm finding impossible to contact- like my mom said, i

> feel i

> have no one to go to for medical help really. Most the drs I see know nothing

> or little bout mito and just treat me for symptoms. I wish I could find

> someone that would help me more. I dont know what id do w/o you guys. I wish I

> could

> be more active here because when i was in the past, i felt so good that i was

> helping others, now i feel so useless. I know im not, but its hard to think

> that way- everything going wrong and all. Im hoping to get my biopsy and other

> results from shoffner in the next few wks- I think if that doesnt point to

> something, that will just knock me down as far as I can go. I had my next few

> months planned out- getting disability, moving out of my parents house, going

> back to school, working PT and now it just seems so out of reach. I know I do

> have it alot better than some, but i guess ive just held this in so long, its

> making it that much worse. thank you alll for letting me vent.....The 2

> questions

> i had were just about what anesthesia I should look into and any other

> suggestions on help with disability? ty again. I'm praying for each of you

> daily.

> take care,

> Adrienne

>

>

>

[Guest guest]

Adrienne,

I promised myself I'd stop writing messages " after " I take my

sleeping pill... but I just wanted to wish you better luck for this

upcoming week. I'm pretty sure SSDI won't approve you this week,

and possibly you won't be able to move out on your own on the

timeline that you had set for yourself, but don't give up on your

dreams.

It sounds like they're learning new things and now it's up to the

doctors to figure out what to do with this info.

Hang in there.

Maggie

> Hey guys,

> This has been a hard week on me. I just wanted to ask some stuff

and let yall

> know how I'm doing. I'm having a hard time typing but have alot to

say so

> think I will try. On Monday I had an EGD with esophogeal

dilatation. They gave me

> propafol and fentanyl. (I cant take benzos like valium, ativan,

and also

> versed cuz they provoke my seizures). I haven't really had probs

with the propafol

> and fentanyl combo till my muscle biopsy but then it only caused

my SAT rates

> to drop into the 80's and my heart rate go up really quickly. That

only

> happened the first 10 mins of coming out of the anesthesia then I

was fine. This

> was in December. Then I used the same combo for the urology tests

they did in

> February- I was fine cept again my SAT rates dropped but not as

much. This time

> though- less than a min coming out of the anesthesia I had 2 grand

mal

> seizures first one lasted about 5 mins the other one less. I had

an aura before them

> right when i was waking up so was able to warn them. They didnt

know how to

> treat me so just doubled up on my seizure meds that day. They kept

me a few

> hours longer than they first planned but didnt admit me. I got

extra fluids too. I

> feel like I've been postictal ever since- I've had a migraine off

and on

> since then, some mild stroke like symptoms, have been very ataxic

these past few

> days along with worsened exercize intolerance. My gi and breathing

probs seem

> to be worse too. Not sure if I contribute that to the rest or the

dialation of

> my esophogus causing the reflux to come up more. The dr also said

that Im

> having severe esophogeal spasms that he could see on the EGD,

errosion at the

> bottom of my esophogus and of course undigested food showing my

gastroparesis has

> gotten worse. I see him monday to find out what he wants to do

now. He did

> mention that since I'm keeping my weight up that a feeding tube

probably isnt

> necessary- I dont know how I'm keeping my weight up though- I cant

eat much and I

> think it might be from bloating from the bowel dysmotility and

also I have

> edema right now. I actually had gained 10 lbs recently, then I

lose it again,

> goes back and forth. My abdominal pain has grown to its worse also-

I just feel

> really awful. Then on Friday I learned that social security denied

both my SSI

> and SSD claims. I had already fallen into a depression cuz of the

events

> earlier this week and how I was feeling. Plus they are still

worried my mom might

> have cancer and it seems that its gonna be hard to figure out if

she does or

> not- thats another story. Then other than you guys and my mom- I

have 3 close

> friends- my ex fiance, my best friend (both live in town) and a

guy friend that

> lives an hour away. My ex fiance isnt much help anymore- hes got

his own GF

> now and works 2 jobs, he never calls me, I was doing the calling,

so i stopped

> finally. Now my best friend has stopped talking to me because of

lies that

> were told to her about some stuff I said. She is now saying that

karma is getting

> me- I dont know if I should talk with her anymore. Shes been under

alot of

> stress but so have i. Then the only other person I really talk

with is my friend

> who lives an hour away- I talk with him once a week and see him

maybe once a

> month. Hes become busier with his own life though at least he

seems to still

> care. The other people that are in my life are aquantances-

friends of my best

> friend, seems they dont care enough to call though. I feel so

alone. Other

> than you guys, its seems I only have my mom and friend that is out

of town. Im

> starting to feel like a burden to my mom also- shes been talking

about how she

> wishes so much that I dont have mito and is hoping the muscle

biopsy is

> negative. Even if it is, doesnt mean i dont have mito. and then

that would mean we

> still dont know the cause of everything. I think my mom wants to

go into

> denial- she seems so overstressed. And she is really stressed (as

am I) about

> disability- I lose my PPO insurance in 3 months- we dont know what

I will do w/o

> that if I dont get disability. There are some alternatives, but

just as long and

> stressful of a process. I feel just way too overwhelmed with all

this. Then my

> local neuro giving up on me, I no longer really have a neuro- just

my

> geneticists in DC that I'm finding impossible to contact- like my

mom said, i feel i

> have no one to go to for medical help really. Most the drs I see

know nothing

> or little bout mito and just treat me for symptoms. I wish I could

find

> someone that would help me more. I dont know what id do w/o you

guys. I wish I could

> be more active here because when i was in the past, i felt so good

that i was

> helping others, now i feel so useless. I know im not, but its hard

to think

> that way- everything going wrong and all. Im hoping to get my

biopsy and other

> results from shoffner in the next few wks- I think if that doesnt

point to

> something, that will just knock me down as far as I can go. I had

my next few

> months planned out- getting disability, moving out of my parents

house, going

> back to school, working PT and now it just seems so out of reach.

I know I do

> have it alot better than some, but i guess ive just held this in

so long, its

> making it that much worse. thank you alll for letting me

vent.....The 2 questions

> i had were just about what anesthesia I should look into and any

other

> suggestions on help with disability? ty again. I'm praying for

each of you daily.

> take care,

> Adrienne

>

>

>