Re: A question for everyone

[Guest guest]

Kim

I would end up in a crash, but it might not hit until the next day. I

don't tolerate the heat and humidity. It takes a lot of cellular

energy to cool the body, especially if the humidity is high.

laurie

> Hello everyone,

>

> I am a lurker and not usually a poster although I was a few years

> ago. I have a question. Here's the scenario:

>

> You are not having a good day to begin with (your myoclonus is pretty

> bad that day) you sit outside in the humidity and heat for a few hours

> in the evening (when it is STILL hot and humid), are probably

> dehydrated and then you smoke a cigar. What would happen to you later

> than evening?

>

> My doctor and I have a disagreement and I thought I'd post the

> question to those who actually suffer from this disorder and haven't

> just read about it in textbooks.

>

> Thanks for your input.

>

> Kim

>

>

>

>

>

>

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

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

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

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

physicians regarding changes in their own treatment.

>

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

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

>

>

[Guest guest]

I would definitely have a crash the next day, maybe even that night. I would

not even last more than at most 1/2 hour and probably less in heat and humidity.

Janet Sample

Re: A question for everyone

Kim

I would end up in a crash, but it might not hit until the next day. I

don't tolerate the heat and humidity. It takes a lot of cellular

energy to cool the body, especially if the humidity is high.

laurie

> Hello everyone,

>

> I am a lurker and not usually a poster although I was a few years

> ago. I have a question. Here's the scenario:

>

> You are not having a good day to begin with (your myoclonus is pretty

> bad that day) you sit outside in the humidity and heat for a few hours

> in the evening (when it is STILL hot and humid), are probably

> dehydrated and then you smoke a cigar. What would happen to you later

> than evening?

>

> My doctor and I have a disagreement and I thought I'd post the

> question to those who actually suffer from this disorder and haven't

> just read about it in textbooks.

>

> Thanks for your input.

>

> Kim

>

>

>

>

>

>

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

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

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

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

physicians regarding changes in their own treatment.

>

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

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

>

>

[Guest guest]

just wondering - what's with the cigars? (do you smoke cigars?)

Re: A question for everyone

Kim

I would end up in a crash, but it might not hit until the next day. I

don't tolerate the heat and humidity. It takes a lot of cellular

energy to cool the body, especially if the humidity is high.

laurie

> Hello everyone,

>

> I am a lurker and not usually a poster although I was a few years

> ago. I have a question. Here's the scenario:

>

> You are not having a good day to begin with (your myoclonus is pretty

> bad that day) you sit outside in the humidity and heat for a few hours

> in the evening (when it is STILL hot and humid), are probably

> dehydrated and then you smoke a cigar. What would happen to you later

> than evening?

>

> My doctor and I have a disagreement and I thought I'd post the

> question to those who actually suffer from this disorder and haven't

> just read about it in textbooks.

>

> Thanks for your input.

>

> Kim

>

>

>

>

>

>

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

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

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

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

physicians regarding changes in their own treatment.

>

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

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

>

>

[Guest guest]

No I don't smoke cigars but my 21 year old (who has MERRF) does

every now and then. Telling him how bad they are for him was

falling on deaf ears. A few weeks ago, though, he was having a bad

day, spent alot of time sitting outside in the heat and humidity

without drinking enough and decided, in all his 21 year old wisdom,

to smoke a cigar (but he doesn't inhale--yeah right). He came

inside and I noticed how bad his mycolonus was and had him lie

down. He had a seizure about an hour later. His movement

specialist (not a mito specialist) says that these factors did not

cause the seizure. He said that his body temperature would have to

have been much higher to cause a seizure. I explained that people

with mito do not regulate their temperatures well and that alot of

energy is expended trying to cool the body off. I believe a

combination of this, dehydration and the nicotine from the cigar

(which excites the brain)set off the seizure. Does he think I'm

stupid. I deal with this day in and day out. I think I know my son

better than he does. Anyway, I didn't argue with him but left

knowing I was probably right which is why I posed the question to

the group.

Thanks for your response.

Kim

[Guest guest]

Kim,

For me anything over 75 with even a little bit of humidity is very bad news. I

have confirmed MELAS but mild compared to my sister and mother.

I get overheated very fast as does my 12 yr old son. He sleeps with a fan on

most of the time, even in the winter. The temp outside has to be about 10

degrees before he decides it is too cold to not have the fan on. He would go

outside in 25 degree weather without a coat if I let him.

I also am almost always hot but I go to extremes. I can be either very hot or

very cold.

Janet Sample

Re: A question for everyone

No I don't smoke cigars but my 21 year old (who has MERRF) does

every now and then. Telling him how bad they are for him was

falling on deaf ears. A few weeks ago, though, he was having a bad

day, spent alot of time sitting outside in the heat and humidity

without drinking enough and decided, in all his 21 year old wisdom,

to smoke a cigar (but he doesn't inhale--yeah right). He came

inside and I noticed how bad his mycolonus was and had him lie

down. He had a seizure about an hour later. His movement

specialist (not a mito specialist) says that these factors did not

cause the seizure. He said that his body temperature would have to

have been much higher to cause a seizure. I explained that people

with mito do not regulate their temperatures well and that alot of

energy is expended trying to cool the body off. I believe a

combination of this, dehydration and the nicotine from the cigar

(which excites the brain)set off the seizure. Does he think I'm

stupid. I deal with this day in and day out. I think I know my son

better than he does. Anyway, I didn't argue with him but left

knowing I was probably right which is why I posed the question to

the group.

Thanks for your response.

Kim

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

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

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

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

physicians regarding changes in their own treatment.

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

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

[Guest guest]

Hi,

My name is . I just kind of lurk in the background and read others

responses. I do have N.A.S.H. (nonalcoholic steatohepititis). It is very

common in mito. This link might be useful: http://digestive.niddk.nih

gov/ddiseases/pubs/nash/ . I first learned that I had mito through

heptatologists doing liver biopsies on me.

Blessings,

in CA

[Guest guest]

For : Thank you very much for the link as it just may answer part of the

reasons for my sons unfortunate/untimely death August 25, 2004. I had never

heard the word " Mito " or terminology Mitochondrial prior to December 15, 2004

when Dr. Baker, my Orthopaedic doctor of 32 years called me and told me from his

research and consultations with my Neurosurgeon that this was his diagnosis and

I needed to get a different Neurologist that would listen to something/someone.

I had been mis-diagnosed with Parkinsons in 2001 and Thank God every day for Dr.

Baker even though it was too late to save my son. My current neuro concurs

completely with the fact that I DID NEVER have Parkinsons. God Bless, Dolores

Jacy Windwhispers greytwhisperer@...> wrote:Hi,

My name is . I just kind of lurk in the background and read others

responses. I do have N.A.S.H. (nonalcoholic steatohepititis). It is very

common in mito. This link might be useful: http://digestive.niddk.nih

gov/ddiseases/pubs/nash/ . I first learned that I had mito through

heptatologists doing liver biopsies on me.

Blessings,

in CA