Re: (unknown)

[Guest guest]

Hi

I know with my symptoms, for a long time they came in short bursts.

Pain-happiness-pain happiness etc.

I started getting worries when those pain free episodes were coming for

shorter and shorter amounts of time. The big enchilada hit when I thought i

pinched a nerve in my neck back in Feb. Between Feb. and July 3 I think

that my symptom free days lasted maybe a couple of days....just long enough

for me to realize what life without a headache or numbness or soreness were

like and how wonderful they were. Then all of a sudden, I'd get that

horrible reminder that those fun days were not lasting long at all.

I am a bath lover. But i noticed too that when I was " in the Chiari mode " ,

taking a hot bath actually made me sick to my stomach and very dizzy.

Before my surgery, it had been ages since I took a bath with the water as

hot as I normally like it and unless the water is oh so hot, I didn't feel

like taking a bath.

I am glad to say that I took a bath today..... a nice hot and long bath

where you add more hot water once the water gets cold. Oh my did it feel

good. I just have to find something that will help prop my head up more

comfortably now that I have joined the zipperhead bridage.

(unknown)

I was wondering- does some peoples Chiari come sin episodes like you

will have symptoms of it for like a month it will go away then like 3 months

later you will have another episode. That seems to be what is happenign to

me. I have had three episodes sooo far this is my third. I din't think

anything of it I thought I was just getting sick. I was extremly tired this

past weekend I couldn't get out of bed it was soooo weird I though tit was

the flu or somthing until I was at work a couple days later, still feelings

very weak and I was going threw another bought of Chiari. I know that it is

due to my Chiari just by the way I feel and the way I have felt the past two

times I went through it. It makes me nuts like I feel sooo lazy ,but I just

can't get up . This morning I tried sooo hard to get up out of bed went and

did some dishes etc... took a shower and that was it I couldn't do anymore .

My left arm hurt sooo much from doing the dishes. I felt like I was going to

pass out when I got out of the shower. The shower always seems to make me

more weak and dizzy when going through these episodes. I also notice I get

very moody to I think it's because

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[Guest guest]

Hi

I know with my symptoms, for a long time they came in short bursts.

Pain-happiness-pain happiness etc.

I started getting worries when those pain free episodes were coming for

shorter and shorter amounts of time. The big enchilada hit when I thought i

pinched a nerve in my neck back in Feb. Between Feb. and July 3 I think

that my symptom free days lasted maybe a couple of days....just long enough

for me to realize what life without a headache or numbness or soreness were

like and how wonderful they were. Then all of a sudden, I'd get that

horrible reminder that those fun days were not lasting long at all.

I am a bath lover. But i noticed too that when I was " in the Chiari mode " ,

taking a hot bath actually made me sick to my stomach and very dizzy.

Before my surgery, it had been ages since I took a bath with the water as

hot as I normally like it and unless the water is oh so hot, I didn't feel

like taking a bath.

I am glad to say that I took a bath today..... a nice hot and long bath

where you add more hot water once the water gets cold. Oh my did it feel

good. I just have to find something that will help prop my head up more

comfortably now that I have joined the zipperhead bridage.

(unknown)

I was wondering- does some peoples Chiari come sin episodes like you

will have symptoms of it for like a month it will go away then like 3 months

later you will have another episode. That seems to be what is happenign to

me. I have had three episodes sooo far this is my third. I din't think

anything of it I thought I was just getting sick. I was extremly tired this

past weekend I couldn't get out of bed it was soooo weird I though tit was

the flu or somthing until I was at work a couple days later, still feelings

very weak and I was going threw another bought of Chiari. I know that it is

due to my Chiari just by the way I feel and the way I have felt the past two

times I went through it. It makes me nuts like I feel sooo lazy ,but I just

can't get up . This morning I tried sooo hard to get up out of bed went and

did some dishes etc... took a shower and that was it I couldn't do anymore .

My left arm hurt sooo much from doing the dishes. I felt like I was going to

pass out when I got out of the shower. The shower always seems to make me

more weak and dizzy when going through these episodes. I also notice I get

very moody to I think it's because

_________________________________________________________________

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http://photos.msn.com/support/worldwide.aspx

Help section: http://www.yahoogroups.com/help/

NOTE: NCC refers to posts with No Chiari Content

To Unsubscribe Yourself:

chiari-unsubscribe

WACMA Home: Http://www.wacma.com

WACMA Online Group: http://groups.yahoo.com/group/chiari/

[Guest guest]

Hi

I know with my symptoms, for a long time they came in short bursts.

Pain-happiness-pain happiness etc.

I started getting worries when those pain free episodes were coming for

shorter and shorter amounts of time. The big enchilada hit when I thought i

pinched a nerve in my neck back in Feb. Between Feb. and July 3 I think

that my symptom free days lasted maybe a couple of days....just long enough

for me to realize what life without a headache or numbness or soreness were

like and how wonderful they were. Then all of a sudden, I'd get that

horrible reminder that those fun days were not lasting long at all.

I am a bath lover. But i noticed too that when I was " in the Chiari mode " ,

taking a hot bath actually made me sick to my stomach and very dizzy.

Before my surgery, it had been ages since I took a bath with the water as

hot as I normally like it and unless the water is oh so hot, I didn't feel

like taking a bath.

I am glad to say that I took a bath today..... a nice hot and long bath

where you add more hot water once the water gets cold. Oh my did it feel

good. I just have to find something that will help prop my head up more

comfortably now that I have joined the zipperhead bridage.

(unknown)

I was wondering- does some peoples Chiari come sin episodes like you

will have symptoms of it for like a month it will go away then like 3 months

later you will have another episode. That seems to be what is happenign to

me. I have had three episodes sooo far this is my third. I din't think

anything of it I thought I was just getting sick. I was extremly tired this

past weekend I couldn't get out of bed it was soooo weird I though tit was

the flu or somthing until I was at work a couple days later, still feelings

very weak and I was going threw another bought of Chiari. I know that it is

due to my Chiari just by the way I feel and the way I have felt the past two

times I went through it. It makes me nuts like I feel sooo lazy ,but I just

can't get up . This morning I tried sooo hard to get up out of bed went and

did some dishes etc... took a shower and that was it I couldn't do anymore .

My left arm hurt sooo much from doing the dishes. I felt like I was going to

pass out when I got out of the shower. The shower always seems to make me

more weak and dizzy when going through these episodes. I also notice I get

very moody to I think it's because

_________________________________________________________________

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http://photos.msn.com/support/worldwide.aspx

Help section: http://www.yahoogroups.com/help/

NOTE: NCC refers to posts with No Chiari Content

To Unsubscribe Yourself:

chiari-unsubscribe

WACMA Home: Http://www.wacma.com

WACMA Online Group: http://groups.yahoo.com/group/chiari/

[Guest guest]

Debbie:

I had surgery eight years ago at the age of 29 for a 1.5 cm herniationd. My

kids were only 3 and 8 at the time and I know exactly how you feel. For me,

surgery gave my life back to me and allowed me to raise my kids for 8 years

pain-free and symptom free. Before surgery, I was homebound, had not been

able to eat solid foods for 6 months, and could barely take care of my kids.

After my surgery, all of my symptoms went away and I was about 95% better,

The only thing I was left with was swallowing difficulties. While there are

a lot of unsuccsful stories, there are also a lot of success stories. You

just don't see or hear about them because like me, they got better and were

busy with their lives.

No one can tell you to have surgery or not, that is your call. I just

wanted you to know there are success stories.

Terri in Michigan

[Guest guest]

If anyone has any suggestions on this, could you please post to the group?

I'm another tired, frustrated mom who's dealing with a child with some

post-op issues (not sleeping). Thanks!

Loretta (mom to Zoe, surgery on 7/22)

(unknown)

> Hi all,

>

> Ok I'm going to try to make this short and sweet if possible. I'm a

> frustrated mother who just needs to vent a little. My son

> (9yrs old) had decompressions surgery on July 23rd, 2002. He's been

> doing great in his ability to get up, run a little, play

> outdoors,etc........however, there are some remaining problems that

> and I as his caregiver(though I love him very much) am getting sooooo

> weary of one issue after the other.

>

> I guess I had my hopes up too high that he would have this surgery

> and come home and things would be back to normal. We are still going

> back and forth to doctors, finding medications that work, coping with

> eratic behaviour, staying up till 1:00 a.m. because he can't sleep

> and the list goes on and on.

>

> He is currently in Occupational Therapy for muscle weakness in his

> neck, arms and hands. He is scheduled to be evaluated by a

> psyiatrist (not a psychiatrist) later in the month.

>

> I guess our biggest problem with him right now is that has a terrible

> time falling asleep at night. I contacted his pediatrician who feels

> he has become addicted to pain killers so will not give him anything

> to sleep. What about his parents?! We need some sleep for pete'sake!

> LOL Does anyone else have this problem post op? Any ideas to help

> him fall asleep......we've tried counting sheep, thinking good

> thoughts, music, relaxation, etc.

>

> Thanks for an info,

>

> Liston (Ohio)

>

>

>

> Help section: http://www.yahoogroups.com/help/

>

> NOTE: NCC refers to posts with No Chiari Content

>

> To Unsubscribe Yourself:

> chiari-unsubscribe

>

> WACMA Home: Http://www.wacma.com

>

> WACMA Online Group: http://groups.yahoo.com/group/chiari/

>

>

>

[Guest guest]

WTG!!!!!!

I had surgery the same day! CONGRADS TO YOU!

Kathy (aka Spooki)

Lap RNY

10/1/02

257/173/140

*Until you love a poodle, a part of your soul remains unawakened.*

www.geocities.com/fyrbyrd1

[Guest guest]

In a message dated 2/12/03 1:48:19 AM Eastern Standard Time,

Louisa_d@... writes:

> They really are clueless in this place...which is probably why the

> prospect of ME being their totally freaked out this teacher.

>

YUCK. That's why I am so excited about 's new school. The head

director told me that they ENCOURAGE parents to come so that the kids don't

always think when their parents are there it's time to go home. (I also

think this will help to generalize between school and home). I wonder

if this is why they don't want us to see what goes on.

At 's school now there is a teacher and two aids everything is broken up

into stations and the kids do the same activity at each station except for

free play. I wonder if you could provide ideas?

[Guest guest]

In a message dated 2/12/03 1:48:19 AM Eastern Standard Time,

Louisa_d@... writes:

> They really are clueless in this place...which is probably why the

> prospect of ME being their totally freaked out this teacher.

>

YUCK. That's why I am so excited about 's new school. The head

director told me that they ENCOURAGE parents to come so that the kids don't

always think when their parents are there it's time to go home. (I also

think this will help to generalize between school and home). I wonder

if this is why they don't want us to see what goes on.

At 's school now there is a teacher and two aids everything is broken up

into stations and the kids do the same activity at each station except for

free play. I wonder if you could provide ideas?

[Guest guest]

In a message dated 2/12/03 1:48:19 AM Eastern Standard Time,

Louisa_d@... writes:

> They really are clueless in this place...which is probably why the

> prospect of ME being their totally freaked out this teacher.

>

YUCK. That's why I am so excited about 's new school. The head

director told me that they ENCOURAGE parents to come so that the kids don't

always think when their parents are there it's time to go home. (I also

think this will help to generalize between school and home). I wonder

if this is why they don't want us to see what goes on.

At 's school now there is a teacher and two aids everything is broken up

into stations and the kids do the same activity at each station except for

free play. I wonder if you could provide ideas?

[Guest guest]

<<I also have really uncomfortable sciatica most of the time - it began when

I

was pregnant 7 years ago, but that was nothing compared to now... Anyone

else have a big

problem with this? Any suggestions?>>

Hi Donna,

I had sciatica for about six months and it was awful. It's weird but I don't

have it anymore (touch wood.) The only thing that helped me was to sit

upright. Sitting seemed to take the pressure off the nerve. It still hurt but

slowly

it would go away. I found I would get the sciatica mostly in the middle of the

night (would wake me up) or when I was shopping - I think this happened

because of the standing and short bursts of walking. I never got sciatica doing

anything strenuous like hiking or long walks - strange. Analgesics rarely helped

because by the time they did their thing - the sciatica had eased up anyway -

the bouts generally lasted around a half an hour or so.

Hope this helps - my sciatica was sooo unbelievably painful so I know what

you're going thru.

Rhonda

[Guest guest]

Donna,

Hi, your fibroid is rather large also. Did you have

an MRI to show you the size you are dealing with?

The reason I am asking, the doctor that read my ct

scan stated that I had a large mass that probably

represents a leiomyoma, though leiomyosarcoma cannot

be excluded due to the size.

I have found on this site that there is an MRI that

will show if it cancer or not. My regular doctor went

on vacation so I have not been sucessful in getting

one of these done.

I sleep with a soft ice pack under the middle of my

back and one in the groin area where my hip and leg

join. This gives me enough relief to get to sleep and

with rest it eases until I am up and on my feet for

awhile.

I was using the heat pad but burned my abdomen

really bad and had to go to a couple doctors with

that. I then discovered the ice packs. If you have not

tried ice packs you might want to try them for your

back and legs.

Good luck,

SC

--- donna_burgmann wrote:

> I'm booked to have a myo early December, and to

> begin with, was actually excited that at long

> last a way out was being offered... For six years

> I've dealt with a steadily growing fibroid (now

> 12x12x10cm).

[Guest guest]

Donna,

Lupron is something that suppress your ovaries and puts you into a " medical

menopause " . It is a shot I will have to take once a month (starting next Wed).

Since it puts you into menopause it stops the Estrogen flow and is supposed to

shrink the fibroids. I will let you know when I have a date!

[Guest guest]

sound like your on your way!! Good for you!!

[Guest guest]

Hi Phil,

I am not familiar with any known or proven genetic link, although IgAN is more

common in men than in women. There seems to be disagreement in the medical

community as to if IgAN is hereditary or not. I tend to think so because I have

a sister with a very mild case of IgAN while mine is more severe, but that is

just based on my experience.

In a message dated 2/21/2005 4:48:11 PM Eastern Standard Time, " phil_m_palmer "

writes:

>

>

>My wife says that she read something on the 'Net about some genetic

>anomially related to IgAN carried by the Y chromosome. Albeit a weak

>study not really proving any genetic link. However, has anyone ever

>read anything about this or any kind of kidney disease carried by the

>man?

>

>My dad's family has a pretty solid history of various kinds of

>UT/kidney disease and UT/kidney abnormalities. My neph. told me that

>years ago science thought the UT was only plumbing and " the kidney was

> the filter. " Since then science seems to think there is a

>relationship that is more codependant then dependant. For instance,

>they realized that there is a uerter back-pressure that if

>out-of-whack can cause the kidneys trouble.

>

>Anyway, I mapped everyone in my dads' family with any kind of UT or

>kidney problems. Amazingly it is always related to the male.

>

>For instance, my paternal grandfather only had a sister. His sister's

>line of the family has NO members with UT/kidney problems. My

>grandfather had a daughter born without one kidney.

>

>My dad, his siter, and his brother all had kids. My dad and his

>brother had kids with UT/kidney problems. My aunt's kids never had any

>UT/kidney problems and neither did any of their children.

>

>My sister had two boys. I have only one child, a son. My son is

>showing symptoms of possible IgAN. Hers are healthy (so far.)

>

>Is this weird or what.

>

>

>

>

>

>

>To edit your settings for the group, go to our Yahoo Group

>home page:

>http://groups.yahoo.com/group/iga-nephropathy/

>

>To unsubcribe via email,

>iga-nephropathy-unsubscribe

>Visit our companion website at www.igan.ca. The site is entirely supported by

donations. If you would like to help, go to:

>http://www.igan.ca/id62.htm

>

>Thank you

>

[Guest guest]

Rita, the answer is yes. You can see your post after you send on PLS

Friends......................Flora

[Guest guest]

Hi alaa

Do you currently have some kind of infection somewhere, either respiratory

or gastrointestinal? These are what commonly cause gross hematuria, and,

when those become resolved, the gross hematuria usually goes away on its own

after a few days or weeks.

Gross hematuria is frightening because you can see it, but, it actually

takes very little blood to colour the urine like that.

Fish oil may increase bleeding if you take too much of it. I am not a

doctor, so, I'm just providing some information which may help you when you

see your doctor.

Pierre

(unknown)

>

> Dear pier

> i am a new member in yahoo group, really it is ver y nice idea and i think

it help to much people

>

> my name is alaa and i am 50years old from egypt

> my story starts from 5 years when i found my urine deep red and this was

for one day

> after a year nearly the attacks started and it was gross haumetria and i

started visiting doctors

> in egypt igan is not common so at the beging no body thought of that

disease they asked me to make x rays,ct,mri ,and many other tests which was

all negative

> at the begining i dont know what are they searching for but after a long

time i found that they was searching for tumors which was negative

>

> in 2003 i went to a doctor who is very famous in blood disease and after

seeing the x ray and ct ....etc he said to me that this is most probably

berger disease and he required biopsy

> i had made the biopsy which showed one -ve iga ,another one +ve,third was

igm

>

> the doctors here agreed that it was iga and i started treatment

> the only treatment that i took for a long time was fish oil

> i started with two capsules,raised to four,reanhed 12 capsule /day

> i was increasing the qty every time i found blood in the urine

> the fish oil stops the blood in urine

> the situation now is as follow

> bp110/70 creatine 1.3

> i am takeing 12 capsule oil fish+ 2mg coversyl +2 capsule cell cept 500mg

> the problem now is that i have gross haumetria and i dont now when it will

stop

> and i donot know what to do

> waiting your reply

> alaa aboul fotouh

>

>

>

[Guest guest]

Ok Galen, we know you're still out there now but there was no message in

your e-mail is this a test to see if we response????.....Flora

[Guest guest]

Hey Galen,

You made it here to N.J., good to hear from you.........Jeannie

Re: (unknown)

>

> I have no idea whether this will " get out " or not, if I still don't know

> anything in a few days I'll try another venue. To make a long story a bit

> shorter, I've moved, and I got booted off the PLS list, though I may be

> back now. I haven't moved out of state, but I have moved farther north in

> the Waterfall State (Florida). I've moved up east of a town called Live

> Oak, right about where I-10 and I-75 intersect, just a few miles from the

> famous Suwannee River. I don't know what the story is with Yahoo, it sent

> me a message telling me that I needed to fix my address, and then when I

> did it told me I was still screwed up, so I went so far as to subscribe

> again and other stuff, but nothing seemed to work. Because moving

required

> changing my driver's license, vehicle registration, bank account (there

> isn't a branch or even an ATM within about 100 miles of me belonging to my

> old bank) and oodles of other stuff, fixing email problems hasn't exactly

> been at the top of my list. As I have a problem talking (actually, it

> isn't hard for me to talk at all, it's the folks around me that have a

> problem understanding what I say), I've had to go into offices and see

> people rather than handling things on the phone. Let's just say it has

> been interesting, and leave it at that. There is only one (1) internet

> service provider in these parts, and while my email address hasn't

changed,

> the new ISP may have a lot to do with it. I have DSL, but right now all I

> can get is the local dial-up number. It has rained here a lot recently,

> rivers are above flood stage and haven't crested yet, and virtually all

the

> cave diving is blown out now. I think that probably has a lot to do with

> my DSL connection, as it began to get pretty spotty as it started to rain,

> and then as the floods got worse it went out entirely. Maybe it will

> return as things dry out, as they are supposed to do this week. I even

got

> big puddles (small ponds?) in my yard, and I'm at 150 feet here, which is

> pretty high ground for Florida. People down by the rivers and stuff in

> this area are getting slammed pretty hard.

>

>

>

> >

> >Galen, if your out there lurking, please write to me privately.

> >

> >Rita

>

> Galen Hekhuis NpD, JFR, GWA ghekhuis@...

> Illiterate? Write for FREE help

>

>

>

>

>

[Guest guest]

Your entire post made it through to N.J...............Jeannie

Re: (unknown)

>

> I have no idea whether this will " get out " or not, if I still don't know

> anything in a few days I'll try another venue. To make a long story a bit

> shorter, I've moved, and I got booted off the PLS list, though I may be

> back now. I haven't moved out of state, but I have moved farther north in

> the Waterfall State (Florida). I've moved up east of a town called Live

> Oak, right about where I-10 and I-75 intersect, just a few miles from the

> famous Suwannee River. I don't know what the story is with Yahoo, it sent

> me a message telling me that I needed to fix my address, and then when I

> did it told me I was still screwed up, so I went so far as to subscribe

> again and other stuff, but nothing seemed to work. Because moving

required

> changing my driver's license, vehicle registration, bank account (there

> isn't a branch or even an ATM within about 100 miles of me belonging to my

> old bank) and oodles of other stuff, fixing email problems hasn't exactly

> been at the top of my list. As I have a problem talking (actually, it

> isn't hard for me to talk at all, it's the folks around me that have a

> problem understanding what I say), I've had to go into offices and see

> people rather than handling things on the phone. Let's just say it has

> been interesting, and leave it at that. There is only one (1) internet

> service provider in these parts, and while my email address hasn't

changed,

> the new ISP may have a lot to do with it. I have DSL, but right now all I

> can get is the local dial-up number. It has rained here a lot recently,

> rivers are above flood stage and haven't crested yet, and virtually all

the

> cave diving is blown out now. I think that probably has a lot to do with

> my DSL connection, as it began to get pretty spotty as it started to rain,

> and then as the floods got worse it went out entirely. Maybe it will

> return as things dry out, as they are supposed to do this week. I even

got

> big puddles (small ponds?) in my yard, and I'm at 150 feet here, which is

> pretty high ground for Florida. People down by the rivers and stuff in

> this area are getting slammed pretty hard.

>

>

>

> >

> >Galen, if your out there lurking, please write to me privately.

> >

> >Rita

>

> Galen Hekhuis NpD, JFR, GWA ghekhuis@...

> Illiterate? Write for FREE help

>

>

>

>

>

[Guest guest]

Alaa

I personally have never been a big fan of fish oil. I've never thought the

studies really support any long term benefit from it. I think you should

discuss this with your doctor, and mention that the visible blood in your

urine stopped after you stopped the fish oil. There is no doubt that fish

oil in the dose suggested on the package has a mild blood thinning effect.

People with IgAN take more fish oil than that dosage recommendation.

The fact that your hematuria has gone down after stopping the fish oil may

just be a coincidence, but it could also be a result of stopping the oil.

There simply isn't much mentioned in the fish oil studies about adverse

effects.

Pierre

P.S. I would not suggest that anyone stop their fish oil based on my

opinion, Ok? But, if it's a concern for you, do discuss it with your

nephrologist.

(unknown)

>

>

> DEAR PIERE

> ITS NICE TO HEAR THAT YOU MAKE YOUR DIALYSIS BY YOUR OWN AND WE ALL SURE

THAT YOU WILL RECOVER AFTER YOUR KIDNEY TRANSPLANT

>

> I WANT TO REMEBER YOU BY MY SITUATION AS I WAS DIAGONSIED AS IGAN

> MY BP IS 110/70 CREATINE 1.3

> I ONLY TAKE COZAR AND LATELY I INCREASED FISH OIL TO 9 TABLETS

> THE PROBLEM WAS IN SEVER HAMUTERIA AND YOU HAVE INFORMED ME BEFORE TAHT

TOO MUCH FISH OIL MAY CAUSE BLEEDING

> FRANQUELY SPEAKING I STOPPED FISH OIL COMPLETELY THE STRANG THING IS THAT

HAUMETRIA STOPS COMPLETELY AND MY URINE IS COLOURLESS AND VERY CLEAR

> WHAT DO YOU SUGGEST ME TO DO

> WAITING YOUR REPLY

> ALAA

>

>

[Guest guest]

Alaa

I personally have never been a big fan of fish oil. I've never thought the

studies really support any long term benefit from it. I think you should

discuss this with your doctor, and mention that the visible blood in your

urine stopped after you stopped the fish oil. There is no doubt that fish

oil in the dose suggested on the package has a mild blood thinning effect.

People with IgAN take more fish oil than that dosage recommendation.

The fact that your hematuria has gone down after stopping the fish oil may

just be a coincidence, but it could also be a result of stopping the oil.

There simply isn't much mentioned in the fish oil studies about adverse

effects.

Pierre

P.S. I would not suggest that anyone stop their fish oil based on my

opinion, Ok? But, if it's a concern for you, do discuss it with your

nephrologist.

(unknown)

>

>

> DEAR PIERE

> ITS NICE TO HEAR THAT YOU MAKE YOUR DIALYSIS BY YOUR OWN AND WE ALL SURE

THAT YOU WILL RECOVER AFTER YOUR KIDNEY TRANSPLANT

>

> I WANT TO REMEBER YOU BY MY SITUATION AS I WAS DIAGONSIED AS IGAN

> MY BP IS 110/70 CREATINE 1.3

> I ONLY TAKE COZAR AND LATELY I INCREASED FISH OIL TO 9 TABLETS

> THE PROBLEM WAS IN SEVER HAMUTERIA AND YOU HAVE INFORMED ME BEFORE TAHT

TOO MUCH FISH OIL MAY CAUSE BLEEDING

> FRANQUELY SPEAKING I STOPPED FISH OIL COMPLETELY THE STRANG THING IS THAT

HAUMETRIA STOPS COMPLETELY AND MY URINE IS COLOURLESS AND VERY CLEAR

> WHAT DO YOU SUGGEST ME TO DO

> WAITING YOUR REPLY

> ALAA

>

>

[Guest guest]

Hi Stacey,

A very warm welcome to our group, although I am saddened that your son had

to be diagnosed for you to find your way here. I was a young teen when I

first had symptoms myself about 30 years ago.

The best place to start off is our sister site at _www.igan.ca_

(http://www.igan.ca)

Pierre put that site up with lots of information presented from a patient's

perspective. That may answer many of your initial questions.

To encourage you, the majority of people who are diagnosed with IgAN, some

50-70% do not reach end stage, and hopefully your son will be in that category.

Please let us know if you have any specific questions too.

Welcome again,

In a message dated 4/22/2005 10:09:08 A.M. Pacific Daylight Time,

stacey_d62@... writes:

My 12 year old son was just diagnoised with IgA Nephropathy. I am looking

for any information that might be helpful to my family. Really not sure what to

expect or do at this point. The doctor isn't real concerned... and it is

hard to find a lot about this anywhere. Thank you in advance for any help you

can give us!

[Guest guest]

,

Do you have any relatives in Mayfield?

Also I know Popular Bluff as we use to drive over there.

Jane Anne

(unknown)

>

[Guest guest]

,

Did the Holshouser own this before the Upton's bought it? This was

after we left Mayfield. We are leaving for Mayfield on Wed. to go home to

see all of relatives that we have left. Not many now. Seems like everyone

there has cancer. Will be back in Ga. on Sunday. Then will have to rest a

while before I start up again.

Jane Anne

(unknown)

>>

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[Guest guest]

Hi , I have PLS and a member of the ALS society. Let me tell you a

couple of things the ALS society has done for me. They have paid for and

installed a lift for my electric wheel chair and they are installing rails

for my bathroom. Also, the ALS society is fixing to merge with MDA. HSP, PLS

and ALS have a lot in common. A cure for one is a cure for another. I have

invited the ALS rep in Memphis and the surrounding area so she can meet

people with HSP. She is going to try and get other reps to come from

different states so people can meet the reps in their state in case the need

help in equipment you may need but can't afford. Dr. Bertirrini, is the

leading Neurologist in the MDA clinic in Memphis. I am also going to try to

get my Neurologist to come also because I don't think she is real familiar

with HSP. This is a PLS and HSP connection for people to meet and have

dinner and get to know each other on a semi personal basis. The others are

just icing on the cake.

(unknown)

Hello,

I have been lurking on this discussion group for several months. My

sister has PLS and does not have Internet access right now so I have

been looking for information for her about this disease. This group

has been so upbeat and helpful. (She was feeling so all-alone in her

condition.) She was DXd about 2 years ago by some doctors in St.

Louis at the Washington University Research Center. She has had

symptoms since the early 1990's. Right now she is using a cane, but

she has fallen several times at home. She says she has no pain, but

does have leg tremors of some sort.

I became very interested in this discussion about West Tennessee folks

because we are located in Southeast Missouri near a town called Poplar

Bluff. Dyersburg is just a little over an hour from us. Union City,

Dyer, Cunningham, Mayfield, Fulton are all familiar names to me

because my parents grew up in that area and we still have relatives

who live there.

I showed my family the email about the gathering at Reelfoot Lake and

they were startled that you were asking a ALS representative to

attend. They said, " Oh! No! sister doesn't have ALS. This won't be

about PLS. " Can you explain this so that I can show it to them?

> Let's meet in Dyersburg TN. Anyone interested call me at

>

>

> Bart

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