age of msa, short of breath and a question

[Guest guest]

hi all,

about the age of msa, i started having symptoms about

5 years ago, was dx'd msa aug of 2001. at time of dx

i was 38. i use a cane or walker most of time, but

falling more now.

thank you michael for info on the short of breath,

that explains a lot to me. i also get short winded,

but they couldn't figure out why,or why my pulse would

shoot up to 135+ while walking.

now for the question. up until a few years ago i

never had a fever while sick, even when appy ruptured,

i had no fever. then about 5 years ago, i would run a

fever is very sick, like with pnuemonia, something

minor, like a sinus infection i stayed normal as in

98.6 normal. last year before being dx'd i had a

fever, low grade of 99.5-100.5. high white count and

was treated for infection. then for a while i had the

fever, but white count normal. then in the winter, my

temp went down to about 97. as the days are getting

warmer, my temp is going up again. i have been

running 99.5-100.5 for a month now. no infection has

shown up anywhere. any one ever heard of this. my gp

has a theory, and a theory only, that since my

autonimic system is affected by the msa, and temp is

autonomic could this be the reason? any comment would

be welcomed at this time. thank you in advance

wanda

__________________________________________________

[Guest guest]

One of the things I have trouble with is regulating heat. I have not been

tested for it but I do know if I excercise and get too warm my energy level

will be down for several days. Even the nicest days cause me to ovrheat. A

sunny 72 degree day feels hot to me. I haven't actually recorded my body

temperature when this happens so I don't know if it the sensation of heat or

actually a change in my temperature. When I was younger I worked outdoors

most of the year and was able to tolerate heat and humidity pretty well.

I have mentioned this to some of the doctors but it seems to be a relatively

minor part of the problem. I can at least pretty much control my

environment. I usually drive to lunch when i go with friends just so I have

control of the AC. If I excercise it is in a pool. The cooling effect of

the water along with the water pressure to help the POTS usually makes it a

pleasant experience. To the chagrin of my wife we start running the AC in

the house about the time it gets to the low seventies outside.

Since temperature regulation is autonomic it makes sense that it would be a

problem with MSA. Sweating along with the dilation of blood vessels are

both required to maintain your body temperature and either one or both can

be impacted by MSA.

I know that the University Hospital autonomic lab in Cleveland does a sweat

test. It sounds kinda gross. The cover you with a special powder and then

warm up a room to see where you are sweating at. The powder turns purple

where you sweat. Seems like a precursor to a tar and feathering. This allows

them to quantify how much of your sweating function is still working. They

say a shower takes care of the purple powder. There is also a sweat gland

stimulation test.

http://mediswww.meds.cwru.edu/dept/neurology/autonomic_laboratory.htm

Anyway I am getting a bit long here. Hope this helps.

mike Plunkett

age of msa, short of breath and a question

hi all,

about the age of msa, i started having symptoms about

5 years ago, was dx'd msa aug of 2001. at time of dx

i was 38. i use a cane or walker most of time, but

falling more now.

thank you michael for info on the short of breath,

that explains a lot to me. i also get short winded,

but they couldn't figure out why,or why my pulse would

shoot up to 135+ while walking.

now for the question. up until a few years ago i

never had a fever while sick, even when appy ruptured,

i had no fever. then about 5 years ago, i would run a

fever is very sick, like with pnuemonia, something

minor, like a sinus infection i stayed normal as in

98.6 normal. last year before being dx'd i had a

fever, low grade of 99.5-100.5. high white count and

was treated for infection. then for a while i had the

fever, but white count normal. then in the winter, my

temp went down to about 97. as the days are getting

warmer, my temp is going up again. i have been

running 99.5-100.5 for a month now. no infection has

shown up anywhere. any one ever heard of this. my gp

has a theory, and a theory only, that since my

autonimic system is affected by the msa, and temp is

autonomic could this be the reason? any comment would

be welcomed at this time. thank you in advance

wanda

__________________________________________________

[Guest guest]

Hi Mike and wanda,

Me to, I have FA which appears to me be fairly the same as the

neurological/ataxia parts of MSA. Mine started with my heart disrythmia, 1988.

and I was put on Warfarin. I was told that this was a normal effect of bad

circulation and thinned blood.

However, I really am unsure now, because sometimes I can get cold, but I'm

feeling quite warm, and also the reverse. I have a fully air-conditioned house

now, which I am glad of, because it keeps both temperature and humidity quite

constant, and because you're not paying for the heat, just pumping it, it is far

cheaper than the old off-peak storage heaters that I had. My main unit pumps up

to 17kW of heat but uses only 1.8kW of electricity.

But despite all the technology, and a thermometer, and a hygrometer (humidity),

all constant, I'm feeling distinctly chilly now, and I may feel hot in a couple

of hours time. Something about temperature has gone definitely dickie as we say

here..

-- from Brine

- brian@...>  Written at 00:44:37 on 10-04-2002

I noted that on  Tue, 9 Apr 2002 17:53:48 -0400,

mplunket@...> wrote:

>

>One of the things I have trouble with is regulating heat.  I have not been

>tested for it but I do know if I excercise and get too warm my energy level

>will be down for several days.  Even the nicest days cause me to ovrheat.  A

>sunny 72 degree day feels hot to me.  I haven't actually recorded my body

>temperature when this happens so I don't know if it the sensation of heat or

>actually a change in my temperature.  When I was younger I worked outdoors

>most of the year and was able to tolerate heat and humidity pretty well.

>

>I have mentioned this to some of the doctors but it seems to be a relatively

>minor part of the problem.  I can at least pretty much control my

>environment.  I usually drive to lunch when i go with friends just so I have

>control of the AC. If I excercise it is in a pool.  The cooling effect of

>the water along with the water pressure to help the POTS usually makes it a

>pleasant experience. To the chagrin of my wife we start running the AC in

>the house about the time it gets to the low seventies outside.

>

>Since temperature regulation is autonomic it makes sense that it would be a

>problem with MSA.  Sweating along with the dilation of blood vessels are

>both required to maintain your body temperature and either one or both can

>be impacted by MSA.

>

>I know that the University Hospital autonomic lab in Cleveland does a sweat

>test.  It sounds kinda gross.  The cover you with a special powder and then

>warm up a room to see where you are sweating at. The powder turns purple

>where you sweat. Seems like a precursor to a tar and feathering. This allows

>them to quantify how much of your sweating function is still working.  They

>say a shower takes care of the purple powder. There is also a sweat gland

>stimulation test.

>http://mediswww.meds.cwru.edu/dept/neurology/autonomic_laboratory.htm

>

>Anyway I am getting a bit long here.  Hope this helps.

>

>mike Plunkett

> age of msa, short of breath and a question

>

>

>hi all,

>

>about the age of msa, i started having symptoms about

>5 years ago, was dx'd msa aug of 2001.  at time of dx

>i was 38.  i use a cane or walker most of time, but

>falling more now.

>

>thank you michael for info on the short of breath,

>that explains a lot to me.  i also get short winded,

>but they couldn't figure out why,or why my pulse would

>shoot up to 135+ while walking.

>

>now for the question.  up until a few years ago i

>never had a fever while sick, even when appy ruptured,

>i had no fever.  then about 5 years ago, i would run a

>fever is very sick, like with pnuemonia, something

>minor, like a sinus infection i stayed normal as in

>98.6 normal.  last year before being dx'd i had a

>fever, low grade of 99.5-100.5.  high white count and

>was treated for infection.  then for a while i had the

>fever, but white count normal.  then in the winter, my

>temp went down to about 97.  as the days are getting

>warmer, my temp is going up again.  i have been

>running 99.5-100.5 for a month now.  no infection has

>shown up anywhere.  any one ever heard of this.  my gp

>has a theory, and a theory only, that since my

>autonimic system is affected by the msa, and temp is

>autonomic could this be the reason?  any comment would

>be welcomed at this time.  thank you in advance

>

>wanda

>

[Guest guest]

Wanda,

I have a normal body temp of 97.4 but if I do

anything, including taking a shower, my body temp

rises. If I am active at all during the day it might

rise to 101.0.

I spoke to my neurosurgeon about this and his

explination was that my muscles are constantly rigid

and working against each other. Exercise and/or

movemnt forces them to work even harder which through

kinetics, causes body temperature to rise. He says

this is common with people with MSA and/or PD+

syndromes.

After my DBS, while the device was in place. My body

temperature returned to my normal 97.4 until I

developed the staph infection in my brain. Since the

DBS removal, I have only had a normal temp for about 3

days. It mostly stays between 99.0 and 100.4.

Hope this helps explain part of it for you.

Tenacity

--- Plunkett mplunket@...> wrote:

> One of the things I have trouble with is regulating

> heat. I have not been

> tested for it but I do know if I excercise and get

> too warm my energy level

> will be down for several days. Even the nicest days

> cause me to ovrheat. A

> sunny 72 degree day feels hot to me. I haven't

> actually recorded my body

> temperature when this happens so I don't know if it

> the sensation of heat or

> actually a change in my temperature. When I was

> younger I worked outdoors

> most of the year and was able to tolerate heat and

> humidity pretty well.

>

> I have mentioned this to some of the doctors but it

> seems to be a relatively

> minor part of the problem. I can at least pretty

> much control my

> environment. I usually drive to lunch when i go

> with friends just so I have

> control of the AC. If I excercise it is in a pool.

> The cooling effect of

> the water along with the water pressure to help the

> POTS usually makes it a

> pleasant experience. To the chagrin of my wife we

> start running the AC in

> the house about the time it gets to the low

> seventies outside.

>

> Since temperature regulation is autonomic it makes

> sense that it would be a

> problem with MSA. Sweating along with the dilation

> of blood vessels are

> both required to maintain your body temperature and

> either one or both can

> be impacted by MSA.

>

> I know that the University Hospital autonomic lab in

> Cleveland does a sweat

> test. It sounds kinda gross. The cover you with a

> special powder and then

> warm up a room to see where you are sweating at. The

> powder turns purple

> where you sweat. Seems like a precursor to a tar and

> feathering. This allows

> them to quantify how much of your sweating function

> is still working. They

> say a shower takes care of the purple powder. There

> is also a sweat gland

> stimulation test.

>

http://mediswww.meds.cwru.edu/dept/neurology/autonomic_laboratory.htm

>

> Anyway I am getting a bit long here. Hope this

> helps.

>

> mike Plunkett

> age of msa, short of breath and a

> question

>

>

> hi all,

>

> about the age of msa, i started having symptoms

> about

> 5 years ago, was dx'd msa aug of 2001. at time of

> dx

> i was 38. i use a cane or walker most of time, but

> falling more now.

>

> thank you michael for info on the short of breath,

> that explains a lot to me. i also get short winded,

> but they couldn't figure out why,or why my pulse

> would

> shoot up to 135+ while walking.

>

> now for the question. up until a few years ago i

> never had a fever while sick, even when appy

> ruptured,

> i had no fever. then about 5 years ago, i would run

> a

> fever is very sick, like with pnuemonia, something

> minor, like a sinus infection i stayed normal as in

> 98.6 normal. last year before being dx'd i had a

> fever, low grade of 99.5-100.5. high white count

> and

> was treated for infection. then for a while i had

> the

> fever, but white count normal. then in the winter,

> my

> temp went down to about 97. as the days are getting

> warmer, my temp is going up again. i have been

> running 99.5-100.5 for a month now. no infection

> has

> shown up anywhere. any one ever heard of this. my

> gp

> has a theory, and a theory only, that since my

> autonimic system is affected by the msa, and temp is

> autonomic could this be the reason? any comment

> would

> be welcomed at this time. thank you in advance

>

> wanda

>

>

> __________________________________________________

>