Re: Re: Has anyone had this happen? (Long)

[Guest guest]

oh my dear....what a trial for you....you will be in my thoughts and prayers.

Vivian

[Guest guest]

a,

I trust you have had an colonscopy and EGD to see what is going on? If

not, I would see about that getting those set up right away. It sounds

like you have a coupus amount of bleeding from somewhere. I think you

need to get looked at right away, and it may have nothing at all to do

with the MELAS remember.

I did have a similar episode ONCE years ago and I went to a local ER and

they put me inpatient right away to do the tests I just mentioned. They

thought it was Croins (sp), but the biopsy didn't show that. They did

give me something to stop the bleeding though and kept me for a couple

of days, This was about 14 years ago. I'm not a doc, but this was my

experience.

Good luck!

pattengale@... wrote:

>Question: I have an appointment with my internist Monday as an existing

>symptom is worsening but . . I need to be informed. I have discussed this

>problem with her in the past but there has been no resolution of the issue.

Has

>anyone on the list had anything like this happen and if so what have you done

>to resolve it?

>

>History: I have MELAS. On several occasions I have had acute onset of

>extreme nausea, no vomiting, abdominal cramping, sweating and then diarrhea.

Once

>the diarrhea subsides I develop chills and generalized weakness. There is

>bright red blood in my stools when this happens. These episodes have lasted

>from 4 to 36 hours and occur once every 3-9 months. The first time it

occurred

>my physician and I thought it was food poisoning the clinical signs were so

>acute and sudden in onset. The recurrent pattern has since made us both feel

>it is related to possible dysautonomia as a part of my MELAS. Eating seems

>to be a trigger but is not related to a specific food or quantity. I have

>even had a can of Glucerna trigger an episode.

>

>Last Sunday was a more severe aberration of the abdominal dysfunction. I

>had not eaten for several hours prior to the onset. This time the pain was

far

>more acute lasting several hours before the onset of other clinical signs.

>Vomiting was characterized by a black grainy to watery material. I literally

>was unable to stand and collapsed on the floor where my husband found me in

>a pool of vomitus. I was then carried to the bathroom where he cleaned me.

>I chose to stay in the bathroom as I could not stand. I remained on the

>floor throughout the night periodically lifting my head to vomit. ( My

husband

>had covered me with towels and blankets. We have a heated tile floor.) I had

>severe generalized pain, sweating and weakness.

>

>By early afternoon on Monday the vomiting had ceased but I had developed a

>black sticky stool. The severe pain and weakness persisted. I was unable to

>eat. I only had a few sips of cold water. My husband carried me downstairs

>in order to monitor me more closely throughout the day. Tuesday I tried to

>eat some chicken soup but the first sip was rapidly regurgitated. Black tarry

>stool persisted. Slightly stronger as was able to walk a short distance

>while assisted. Took a brief shower while seated on my shower stool. (I

still

>had vomitus in my ears. Normally I stand when showering.)

>

>Wednesday I was slightly improved. I was actually able to put one of my

>hearing aids in. Pain and weakness persisted. Had first soup. Able to keep

it

>down. Able to eat half a baked potato. Wednesday was the first day I was

>able to take any of my medications. My fasting blood glucose was 160 which

>was odd as had had nothing to eat for 48 hours but I had not had any of my

>diabetic medications either. Black stools less frequent and interspersed with

>bright bloody mucous. Thursday showed slight increase in strength but still

>painful and weak. No vomiting or diarrhea. Did develop bloating but only

>eating baked potato and chicken soup. Friday again showed slow improvement in

>strength. Pain reduced. By evening ate a normal meal. Sleeping has

gradually

> improved throughout the week. Have dozed most of both day and night but

>real sleep difficult due to muscular pain. Problems with myoclonus last

night.

> Improvement slow but at least improvement this morning. (I was able to

>write this email which I could not have done yesterday.) Able to dress for

>first time this week.

>

>Throughout this whole process the slightest exertion has lead to a pounding

>heart beat which persists for a variable period of time even while at rest.

>My husband wanted to call 911 when this whole episode began but I was

>unwilling to trust the paramedics and my normal physician is 2 1/2 hours'

drive away.

>

>Any insight will be greatly appreciated. As with most our PCPs mine does

>not see enough MELAS patients to have any broad background of experience on

>which to draw. You are my " data base. " Thank you so much for your help.

>

>a

>

>

>

>

>

>

[Guest guest]

What you have described is classic as signs/symptoms of an acute GI bleed.

First, ask for a CBC to evaluate how significant the blood loss was. Then ask

for a formal GI consult. It is likely they will recommend an EGD and

colonoscopy to see if they can identify the source of the bleeding.

Joanne Kocourek (mom to , lies, and )

visit us at: http://www.caringbridge.org/il/annakris

[Guest guest]

Not sure what may be causing this but I have had similiar episodes but only a

couple of times over my life of 43 years. I have MELAS but my main symptoms are

diabetes controlled by an insulin pump, infrequent constipation, and neuropathy

and muscle weakness which are mild.

My 13 yr old son had similiar problems back when he was 10 yrs old for a period

of about a year. After we started Qgel he has not had problems. before the

diahrea/constipation problem period he also went thru a period in 1st grade with

migraine headaches.

Janet Sample

Re: Has anyone had this happen? (Long)

Question: I have an appointment with my internist Monday as an existing

symptom is worsening but . . I need to be informed. I have discussed this

problem with her in the past but there has been no resolution of the issue.

Has

anyone on the list had anything like this happen and if so what have you done

to resolve it?

History: I have MELAS. On several occasions I have had acute onset of

extreme nausea, no vomiting, abdominal cramping, sweating and then diarrhea.

Once

the diarrhea subsides I develop chills and generalized weakness. There is

bright red blood in my stools when this happens. These episodes have lasted

from 4 to 36 hours and occur once every 3-9 months. The first time it

occurred

my physician and I thought it was food poisoning the clinical signs were so

acute and sudden in onset. The recurrent pattern has since made us both feel

it is related to possible dysautonomia as a part of my MELAS. Eating seems

to be a trigger but is not related to a specific food or quantity. I have

even had a can of Glucerna trigger an episode.

Last Sunday was a more severe aberration of the abdominal dysfunction. I

had not eaten for several hours prior to the onset. This time the pain was

far

more acute lasting several hours before the onset of other clinical signs.

Vomiting was characterized by a black grainy to watery material. I literally

was unable to stand and collapsed on the floor where my husband found me in

a pool of vomitus. I was then carried to the bathroom where he cleaned me.

I chose to stay in the bathroom as I could not stand. I remained on the

floor throughout the night periodically lifting my head to vomit. ( My

husband

had covered me with towels and blankets. We have a heated tile floor.) I

had

severe generalized pain, sweating and weakness.

By early afternoon on Monday the vomiting had ceased but I had developed a

black sticky stool. The severe pain and weakness persisted. I was unable to

eat. I only had a few sips of cold water. My husband carried me downstairs

in order to monitor me more closely throughout the day. Tuesday I tried to

eat some chicken soup but the first sip was rapidly regurgitated. Black

tarry

stool persisted. Slightly stronger as was able to walk a short distance

while assisted. Took a brief shower while seated on my shower stool. (I

still

had vomitus in my ears. Normally I stand when showering.)

Wednesday I was slightly improved. I was actually able to put one of my

hearing aids in. Pain and weakness persisted. Had first soup. Able to keep

it

down. Able to eat half a baked potato. Wednesday was the first day I was

able to take any of my medications. My fasting blood glucose was 160 which

was odd as had had nothing to eat for 48 hours but I had not had any of my

diabetic medications either. Black stools less frequent and interspersed

with

bright bloody mucous. Thursday showed slight increase in strength but still

painful and weak. No vomiting or diarrhea. Did develop bloating but only

eating baked potato and chicken soup. Friday again showed slow improvement

in

strength. Pain reduced. By evening ate a normal meal. Sleeping has

gradually

improved throughout the week. Have dozed most of both day and night but

real sleep difficult due to muscular pain. Problems with myoclonus last

night.

Improvement slow but at least improvement this morning. (I was able to

write this email which I could not have done yesterday.) Able to dress for

first time this week.

Throughout this whole process the slightest exertion has lead to a pounding

heart beat which persists for a variable period of time even while at rest.

My husband wanted to call 911 when this whole episode began but I was

unwilling to trust the paramedics and my normal physician is 2 1/2 hours'

drive away.

Any insight will be greatly appreciated. As with most our PCPs mine does

not see enough MELAS patients to have any broad background of experience on

which to draw. You are my " data base. " Thank you so much for your help.

a

[Guest guest]

Just remembered that one of the times this happened was when I switched from

pill form of carnitor to liquid. My gp had made an honest mistake and wrote 1

tablespoon 4 times a day rather than 2 teaspoons 4 times a day. The pharmacist

and I figured that out after reading over the dilution info. Also, I found out

you are supposed to start out gradually when switching. My body was absorbing

the liquid much, much better than the pill form.

Janet Sample

Re: Has anyone had this happen? (Long)

Question: I have an appointment with my internist Monday as an existing

symptom is worsening but . . I need to be informed. I have discussed this

problem with her in the past but there has been no resolution of the issue.

Has

anyone on the list had anything like this happen and if so what have you done

to resolve it?

History: I have MELAS. On several occasions I have had acute onset of

extreme nausea, no vomiting, abdominal cramping, sweating and then diarrhea.

Once

the diarrhea subsides I develop chills and generalized weakness. There is

bright red blood in my stools when this happens. These episodes have lasted

from 4 to 36 hours and occur once every 3-9 months. The first time it

occurred

my physician and I thought it was food poisoning the clinical signs were so

acute and sudden in onset. The recurrent pattern has since made us both feel

it is related to possible dysautonomia as a part of my MELAS. Eating seems

to be a trigger but is not related to a specific food or quantity. I have

even had a can of Glucerna trigger an episode.

Last Sunday was a more severe aberration of the abdominal dysfunction. I

had not eaten for several hours prior to the onset. This time the pain was

far

more acute lasting several hours before the onset of other clinical signs.

Vomiting was characterized by a black grainy to watery material. I literally

was unable to stand and collapsed on the floor where my husband found me in

a pool of vomitus. I was then carried to the bathroom where he cleaned me.

I chose to stay in the bathroom as I could not stand. I remained on the

floor throughout the night periodically lifting my head to vomit. ( My

husband

had covered me with towels and blankets. We have a heated tile floor.) I

had

severe generalized pain, sweating and weakness.

By early afternoon on Monday the vomiting had ceased but I had developed a

black sticky stool. The severe pain and weakness persisted. I was unable to

eat. I only had a few sips of cold water. My husband carried me downstairs

in order to monitor me more closely throughout the day. Tuesday I tried to

eat some chicken soup but the first sip was rapidly regurgitated. Black

tarry

stool persisted. Slightly stronger as was able to walk a short distance

while assisted. Took a brief shower while seated on my shower stool. (I

still

had vomitus in my ears. Normally I stand when showering.)

Wednesday I was slightly improved. I was actually able to put one of my

hearing aids in. Pain and weakness persisted. Had first soup. Able to keep

it

down. Able to eat half a baked potato. Wednesday was the first day I was

able to take any of my medications. My fasting blood glucose was 160 which

was odd as had had nothing to eat for 48 hours but I had not had any of my

diabetic medications either. Black stools less frequent and interspersed

with

bright bloody mucous. Thursday showed slight increase in strength but still

painful and weak. No vomiting or diarrhea. Did develop bloating but only

eating baked potato and chicken soup. Friday again showed slow improvement

in

strength. Pain reduced. By evening ate a normal meal. Sleeping has

gradually

improved throughout the week. Have dozed most of both day and night but

real sleep difficult due to muscular pain. Problems with myoclonus last

night.

Improvement slow but at least improvement this morning. (I was able to

write this email which I could not have done yesterday.) Able to dress for

first time this week.

Throughout this whole process the slightest exertion has lead to a pounding

heart beat which persists for a variable period of time even while at rest.

My husband wanted to call 911 when this whole episode began but I was

unwilling to trust the paramedics and my normal physician is 2 1/2 hours'

drive away.

Any insight will be greatly appreciated. As with most our PCPs mine does

not see enough MELAS patients to have any broad background of experience on

which to draw. You are my " data base. " Thank you so much for your help.

a