Re: (unknown)

[Guest guest]

hi ,

I

have always heard, that ridges on your fingernails--meant you had a Thyroid

Problem. That in is one of the symptems listed in many Drs. manuels. Just a

thought,- you might want to invistigate!! By, the way, , I don't charge

any thing for my advise!!!!!!!!

..

[Guest guest]

... I can't believe she's that young and had a stroke... I guess

there isn't any set rules of who can get them and who can't.... I'm just

supprised. Please, when you find out more could you pass it along to

us. I'm interested because on my fathers side of the family....

everyone died of a stroke. They do so much more now that can help then

they did back then.

What happens if the doctors you have a choice of don't know anything

about myositis? Can you then call your insurance company and ask to see

a Rheumy that is knowlegeable about the disease.... ???

Hey, whining is good for the soul...

Vicki

[Guest guest]

hi JULIE, And all of our E-groups

Yes, --I had the most wonderful weekend--All I expected. We had a good

time remembering, old neighbors--and all the former good and bad traits of

people we useed to kmow. I had food ordered, my aide went to " Rib-Tickler

and picked it up, and my daughter, ordered breakfast Kalachies, and as for

the food deptpartment had it made. I bought the video of " Pretty Woman " and

we watched it. Steve, had never watched it, but I have seen about 5 or 6

times==I enjoy it every time I watch it--Steve really liked it, enven though,

He hardly watches home video's. Last night, we went to Friendswood--60 miles

from here-to take my grandson back to his Dad's house, with my daughter,

being our giud and driver. On the way back, she took a different route, so

Steve could get a look around Houston, where he lived years ago. My

daughter, Marilyn, lives with-in walking didstance--for normal walkinf of my

apartment. She is a school educational diagnostnostion. She and Steve got

along, real well, since he taught shool for 23 years, and also was a

principal. They had a lot in common. So all in and all, my weekend turned

out to be awonderful way to spend a weekend. Even improved my aches and

pains. so any of you out there, that needs a boost to there IBM, I highly

recommend this, kind of a cyber-Romance!!!!!

Love,

Ev.

[Guest guest]

Hi ....I'm sorry about the MRI findings. But, I also think it's

part of myositis. Although the doctors aren't sure. My neck and back

problems are due to my Osteoarthritis. When I turn my head side to side

I can hear it making all these popping noises...also hurts. I do have

times when I'm not able to move my head in either direction. When I'm

out shopping I have to keep going....if I stand still for even a few

minutes my back starts to really hurt. Of course my weight is not

helping. It throws my balance off.

Ev.... You've been very blessed to find a good friend. I'm so happy you

both had a really nice time...good for you. Keep us posted and I do

hope you have many more dates.

Mike .... I forgot that DM forms holes in the muscles... PM forms tears.

Deneen... hope your doing better. I worry about your weight. Can the

doctor explain why your loosing more weight? Remember, if you get

really sick it won't help you with your case. Take time off for your

self while your going through this mess. Hope today was better for you.

.... I hope your doing better today. Any thing new on the

horizon?

Sandy.... how are things going for you?

Sherry.... how are you doing? Any better?

To everyone else.. hope you all had a great day and check in when you

can. I sometimes get to the point where I feel I don't have anything to

say....my life is dull. But, try to drum up something...especially

those that haven't checked in for some time. We would love hearing from

you.

Take care everyone.

Vicki

[Guest guest]

Hello All,

It's me, Sherry, I haven't written for a while, I, like you said, Vicky, don't really have much to say. I am stuck in a rut. Nothing changes; I know very little more about LGMD than I did when I was diagnosed. I see the specialist on the 27th; I am looking forward to talking to someone who knows something about this disease. I have been enjoying being at home though. The house looks better, and we have actually sat down and ate at the dining table as a family a few times. I can't remember the last time we did that. It was awkward the first time, it was like noone knew what we were suppose to do at the table. It feels good to rest when I feel like I need to. Cari, how's 's rash, I haven't heard from you for awhile. I don't want to start naming names, I am afraid I will leave someone out, so I hope everyone is hanging on. You are all so dear to me, you feel like a family- I guess in a way we are, huh? God Bless!

>From: anzavic@... >Reply-To: OurMyositis >To: OurMyositis >Subject: Re: (unknown) >Date: Tue, 6 Feb 2001 19:33:20 -0800 (PST) > > > >Hi ....I'm sorry about the MRI findings. But, I also think it's >part of myositis. Although the doctors aren't sure. My neck and back >problems are due to my Osteoarthritis. When I turn my head side to side >I can hear it making all these popping noises...also hurts. I do have >times when I'm not able to move my head in either direction. When I'm >out shopping I have to keep going....if I stand still for even a few >minutes my back starts to really hurt. Of course my weight is not >helping. It throws my balance off. > >Ev.... You've been very blessed to find a good friend. I'm so happy you >both had a really nice time...good for you. Keep us posted and I do >hope you have many more dates. > >Mike .... I forgot that DM forms holes in the muscles... PM forms tears. > >Deneen... hope your doing better. I worry about your weight. Can the >doctor explain why your loosing more weight? Remember, if you get >really sick it won't help you with your case. Take time off for your >self while your going through this mess. Hope today was better for you. > >.... I hope your doing better today. Any thing new on the >horizon? > >Sandy.... how are things going for you? > >Sherry.... how are you doing? Any better? > >To everyone else.. hope you all had a great day and check in when you >can. I sometimes get to the point where I feel I don't have anything to >say....my life is dull. But, try to drum up something...especially >those that haven't checked in for some time. We would love hearing from >you. > >Take care everyone. >Vicki > Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Ev, I'm so happy that things went so well for you this past weekend. You deserved something great! Let good feelings carry you all through the next week.

Thinking of you. Sue

[Guest guest]

,

Absolutely you should say that to the nurse if that is what you are feeling!

Maybe she will relay this to the Dr. They must learn to be more

respectful.

Hugs,

Cari

>From: gide672@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: (unknown)

>Date: Wed, 07 Feb 2001 02:41:41 -0000

>

>Hi Guys,

>Yes Mike, WE GOT THE SNOW- next time i'll do my best to send it up

>your way. Next question, which you may not know--- just what body

>part or parts do they intend to image? leg muscles, arms, more? An

>MRI can also show areas of muscle inflammation that i believe may

>turn up white on the scan. Helpful when myositis is spotty, which I

>gather it can often be. I was hoping something might show up in my

>neck area, but I truly do not know if anything else did- i was simply

>told today that my neck MRI does indeed show degenerative c-spine

>changes and most likely another herniated disc--- duh, I think I knew

>that already. I get this info from my internist simply writing a note

>in my file which the nurse reads to me when she calls with results. I

>had a couple of questions for her, but she said she could have the

>doctor call me. I said, " no thanks- I don't think he ever wants to

>see me again. " Now- maybe I should NOT have said that, but I FELT

>like it!!!! So- will sit on my butt until I see the neurosurgeon Feb

>28. Today I did nt feel too badly- even went to choir practice which

>I enjoyed. My CPK was 50 and sed rate 0. I rather expected that to be

>the case- but I KNOW there have been other " things " going on with the

>old body--- and I just pray we can get it figured out so I dont

>eventually become a cripple! I read on the other myo board of a gal

>who has gotten 4 herniated discs ( in same areas as me apparently)

>due to the myositis- or at least a sort of indirect cause of it.

>Fern, yes, I think you have enough to deal with. It'll be interesting

>to see what kind of reaction I get from the 2 specialts I'll be

>seeing. I only hope they truly listen to me and respect me. Love to

>all-

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Hi Sherry,

We keep missing each other on Yahoo Messenger. I know sometimes it looks

like I'm on but usually it is one of my kids sitting there or my husband.

By the time I see your name flashing you are gone. Sorry. Keep trying me.

's rash is fine. The Dr. said we will probably never know what caused

it. It looked so bad for a few days. He is back at preschool. The kids

had all drawn pictures for him. The whole class called him on his birthday

and sang to him. He loved it! They all hugged him when he walked in the

room yesterday morning.

Hugs to all,

Cari

>

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: (unknown)

>Date: Wed, 07 Feb 2001 00:32:20 -0500

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

Hello All,

It's me, Sherry, I haven't written for a while, I, like you said, Vicky, don't really have much to say. I am stuck in a rut. Nothing changes; I know very little more about LGMD than I did when I was diagnosed. I see the specialist on the 27th; I am looking forward to talking to someone who knows something about this disease. I have been enjoying being at home though. The house looks better, and we have actually sat down and ate at the dining table as a family a few times. I can't remember the last time we did that. It was awkward the first time, it was like noone knew what we were suppose to do at the table. It feels good to rest when I feel like I need to. Cari, how's 's rash, I haven't heard from you for awhile. I don't want to start naming names, I am afraid I will leave someone out, so I hope everyone is hanging on. You are all so dear to me, you feel like a family- I guess in a way we are, huh? God Bless!

>From: anzavic@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: (unknown)

>Date: Tue, 6 Feb 2001 19:33:20 -0800 (PST)

>

>

>

>Hi ....I'm sorry about the MRI findings. But, I also think it's

>part of myositis. Although the doctors aren't sure. My neck and back

>problems are due to my Osteoarthritis. When I turn my head side to side

>I can hear it making all these popping noises...also hurts. I do have

>times when I'm not able to move my head in either direction. When I'm

>out shopping I have to keep going....if I stand still for even a few

>minutes my back starts to really hurt. Of course my weight is not

>helping. It throws my balance off.

>

>Ev.... You've been very blessed to find a good friend. I'm so happy you

>both had a really nice time...good for you. Keep us posted and I do

>hope you have many more dates.

>

>Mike .... I forgot that DM forms holes in the muscles... PM forms tears.

>

>Deneen... hope your doing better. I worry about your weight. Can the

>doctor explain why your loosing more weight? Remember, if you get

>really sick it won't help you with your case. Take time off for your

>self while your going through this mess. Hope today was better for you.

>

>.... I hope your doing better today. Any thing new on the

>horizon?

>

>Sandy.... how are things going for you?

>

>Sherry.... how are you doing? Any better?

>

>To everyone else.. hope you all had a great day and check in when you

>can. I sometimes get to the point where I feel I don't have anything to

>say....my life is dull. But, try to drum up something...especially

>those that haven't checked in for some time. We would love hearing from

>you.

>

>Take care everyone.

>Vicki

>

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

It sounds like a wonderful weekend Ev. I hopw there are many more to come.

He sounds like a wonderful person.

Hugs,

Cari

>From: SueS36695@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: (unknown)

>Date: Wed, 7 Feb 2001 07:43:11 EST

>

>Ev, I'm so happy that things went so well for you this past weekend. You

>deserved something great! Let good feelings carry you all through the next

>week.

>Thinking of you. Sue

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Good Morning to Everyone...

Hi Sherry... In doing research on LGMD, I think I sent you some stuff,

it seems that they are doing or getting ready to start clinical trials

for the disease. One article said the trials looked very promising. I

hope your doctor explains the trials to you and maybe you can get in on

one of them.

Seeeee, there is something good coming out of your disease.... " A Clean

House " !.

I'm so glad though that you don't have to work while your going through

this.

Take care,

Vicki

[Guest guest]

,

I will do it straight away. Jill is not available, but I will take of that

for you. Just let me know when you are ready to return.

Beth

(unknown)

> Jill,

> Can u please take me off the list for about 4 days? I

> have a virus in my computer and I don't want anyone

> else's to become infected

>

> Thank u ,

>

>

[Guest guest]

In a message dated 1/4/2003 1:49:13 PM Eastern Standard Time,

SteigGirl2@... writes:

> Oh, this is a GREAT idea!! I have got to do it, just get a laugh!!

>

Another idea is to buy him his own bottle and fill it when you fill yours.

Make it a cool one - maybe with is favorite sports team or whatever. Be sure

you keep his filled. After a while, he'll be as posessive as you are <g>.

-Crys-

(Lifetimer since August 1995)

WW to date: 178.6/ 140.2 / 140   (-38.4)

Weight in 2003: 139.6 / 140.2 / 130 (+0.6)

Well, the day has just begun and I'm already running late.

With too many Irons in the fire and too much on my plate.

I'd be pulling out my hair if I could just get one had free,

And I'd stop the world if I could find the key!

What I see is telling me the worlds gone crazy.

But what is real says God's still on his throne.

What I need is to remember one thing:

That the Lord of the gentle breeze is Lord of the rough and tumble.

And He is the King of the jungle!

- Curtis Chapman-

[Guest guest]

" HOW MUCH

DID YOU JUST DRINK? DAMN, NOW I HAVE TO START OVER, GET YOUR OWN DERN

GLASS YOU MOOCHER " !! everyday I say these words, but he says " your

water just tastes better " , but he's just too " busy " to go get his

own. One day, Im gonna lace it with something to set his lips on

fire, or maybe salt it down really good, that ought to teach the big

mooch!!

Oh, this is a GREAT idea!! I have got to do it, just get a laugh!!

Hahahahahahahaha

Semalee

[Guest guest]

Charlotte,

There is a lot of research going on out there.......I know that there are

lots of studies going on at the teaching hospital I'm at. Its not all to do

with IgA but kidney disease generally and autoimmune diseases too and this

will eventually help to solve our problems I hope.

who is also a member of this group, with a lot on his plate at the

moment, is under a Neph who thinks he knows the causes of IgA, and there is

another Doc in the UK who is working on a blood test to help

diagnosis.......that's just two and I'm pretty sure Pierre knows about a lot

more.......so there is a lot of positive things going on. Our job as

patients with IgA is to stay as positive as we can, keep ourselves informed

and politely 'educate' those members of the medical profession who don't

know much about IgA, the best we can.......easier said than done sometimes!

But that way, we will be helping others who are coming on behind us and

that's a pretty good contribution to life, I think.

Sally.

PS Here's the info from Dr Bruce n below and before it, is the comment

made which is quite exciting and I hope you don't mind me giving

you a high profile here!

SNIP.......I also met with a transplant doctor there whose specialty is IGA,

he

> called it his passion. His name is Dr. Bruce n and he does lots

> of genetic studies on IGA. He talked a lot about inheritance of the

> genes and where exactly they come from. It was great talking to a

> nephrologist who actually seems to know something in great detail

> about this disease. He told me that they had identified which genes

> were the cause of IGA as well as what exactly happens (Something to

> do with extra sugar molecules) Next time I meet with him i'll try to

> get more information. He has great hopes that there will be a

> genetic " fix " to this someday...........SNIP

IgA NEPHROPATHY: AN AUTOIMMUNE CHARACTER OF THE DISEASE

J. Mestecky, J. Novak, B.A. n, M.Tomana

Departments of Microbiology and Medicine, University of Alabama at

Birmingham, USA

IgA1 nephropathy (IgAN), the most common glomerulonephritis in the world, is

characterized by the deposition of IgA1, C3 and IgG, and/or IgM in the

glomerular mesangium, elevated serum levels of IgA1, and of circulating

immune complexes (CIC) containing IgA1, IgG, and C3. Recent studies indicate

that IgA1 molecules in CIC and in mesangial deposits display aberrant

glycosylation patterns of O-linked glycan chains in the IgA1 hinge region:

there is a deficiency of galactose (Gal) linked by beta 1,3 glycosidic bond

to N-acetylgalactosamine (GalNAc) that is usually sialylated. Direct

carbohydrate analyses, and reactivities with lectins and sets of monoclonal

and polyclonal antibodies indicate that terminal GalNAc residue(s) generate

an antigenic determinant apparently shared with microorganisms that colonize

and infect mucosae. Consequently, sera of healthy individuals and IgAN

patients contain high titers of antibodies to GalNAc in the IgA1 hinge

region. In IgAN patients, these antibodies form CIC with Gal-deficient IgA1

with subsequent mesangial deposition. Thus, IgAN should be considered as an

autoimmune disease with Gal-deficient hinge region of IgA1 as an antigen.

Undergalactosylation of the IgA1 hinge region may involve deficiency of beta

1,3 galactosyltransferase and/or increased intracellular activity of alpha

2,6 sialytransferase resulting in premature sialylation and deficient

galactosylation of GalNAc. Intracellular activities of these

glycosyltransferases are influenced by various cytokines and viral

infections that frequently induce episodes of macroscopic hematuria.

(unknown)

Dear Everyone,

You all talk about different levels and path reports

and one of the girls asked me for my path stuff .I have never known

these things .Every thing i am told is very much in laymen terms.All

i know is what the neph tells me and that it seems is not much.I have

a history of progession of the iga from the age of ten iam now 39 and

the condition is in an agressive form and the doc has put me on fish

oil . I have started with acupunture myself to try and increase my

energy levels .I have read alot on iga and still i am perplexed at

what will happen and reading what you all say helps me to understand

that this iga is a unique thing and attacks us in varying ways .It is

a cruel condition who out there has the answer to end all the

suffering .Is there an answer to this question .Lets hope we find it

soon.

[Guest guest]

When The Doc. first started talking transplant with me, he introduced me to a

woman who had been on dialysis since she was in her teens. She had a transplant

and the nephrologists helped her through her pregnacy. So I think, go ahead,

just talk to the nephrologist. I plan on going back to work ftermine and I am a

teacher.

(unknown)

Hi,

I'm new here. My husband was diagnosed IGA nephropathy in 1995. He

has a high blood pressure, blood and protein in his urine. He feels

very good, no any pain. About a month ago, the doctor told us that

his creatinin level very high, his kidney function about 35%. And we

have to think about a transplantation. We don't know anybody who had

a transplantation. I'm very afraid. He is the most important in my

life. How long can somebody live after the transplant? He is only 32.

And we don't even have a child. I heard, after the transplantation he

easily can die just in a simply flu. Is it true? Can we plan a child?

Children usually got chickenpox, etc. Is it really dangerous for my

husband?

Thank you for any comment.

Sorry, if my English not the best.

Timi

Vancouver, Canada

[Guest guest]

Hi Timi.

Welcome to the group.

The first thing I think you should do is ask your husband's nephrologist if

you can be referred for treatment options education (sometimes called

pre-dialysis classes, but this is a misnomer, as they educate about all the

options including transplant). Usually this is done when patients are about

a year away from needing dialysis (approx. 30% kidney function).

To answer your specific questions:

How long can somebody live after the transplant? Indefinitely. The

transplanted kidney might not last as long as your husband's lifetime, but

if that happens, he goes on dialysis and hopefully, he can still get another

transplant. A related live donor transplant might easily last 25 years or

more (but of course, nobody can predict that for sure). I know people who

had a non-related cadaver transplant more than 15-20 years ago and are still

going strong with no signs of rejection.

After the transplantation he easily can die just in a simply flu. Is it

true? It's true that people with transplants can more easily catch flus,

etc., because their immune systems are depressed a bit. Do they die? Well,

anything is possible, but no, they don't usually. They have to be more

careful, and they have to stay aware of the need to contact the transplant

centre when there's any sign of illness. They are also followed regularly,

and they are given a list of things to do to stay healthy. For example,

temperature is checked twice daily, and anytime the temperature is above

37.8 C, they are supposed to call the transplant nurse right away. Same with

other signs they have to watch for.

Yes, a man can father a child after a kidney transplant, and on dialysis

too. It happens all the time. In fact, a man or woman is likely to be more

fertile after the transplant than before. Yes, it may be more problematic to

have children around who bring infectious diseases home, but there are

thousands of people like that, and they manage. It won't be as easy as if he

didn't have kidney failure and a transplant, but it's manageable. Of course,

this is something you should discuss with his doctor when the time comes.

Hopefully, your husband still has a long time to go before he needs it.

Pierre

Ottawa, Canada

(unknown)

> Hi,

>

> I'm new here. My husband was diagnosed IGA nephropathy in 1995. He

> has a high blood pressure, blood and protein in his urine. He feels

> very good, no any pain. About a month ago, the doctor told us that

> his creatinin level very high, his kidney function about 35%. And we

> have to think about a transplantation. We don't know anybody who had

> a transplantation. I'm very afraid. He is the most important in my

> life. How long can somebody live after the transplant? He is only 32.

> And we don't even have a child. I heard, after the transplantation he

> easily can die just in a simply flu. Is it true? Can we plan a child?

> Children usually got chickenpox, etc. Is it really dangerous for my

> husband?

>

> Thank you for any comment.

> Sorry, if my English not the best.

>

> Timi

> Vancouver, Canada

>

>

[Guest guest]

I wish you'd give this group another chance. Most of us read everything, but

if we find we have no insight we don't post. I do believe the moderators do

a great job of replying, though, and maybe your post was overlooked.

Please try again-I think this group can help.

In a message dated 3/20/03 2:40:19 PM Central Standard Time,

rahdjm@... writes:

<<

> When I was diagnosed I looked all over for a support group. I felt

so

> alone. When I found this group I thought I finally found some help,

> but I guess not. I have never felt welcomed here at all. Twice now

I

> have asked questions and no one answers me. Once CC from Idaho seen

> what I had asked and she asked it again and was answered right

away.

> I wish you all luck with this disease. I will go find some support

> elsewhere. >>

[Guest guest]

It would also help, I think, if the member's settings were on something

other than " no email " !

Pierre

Re: (unknown)

> I totally agree with your statement. If a question was

> overlooked it was just that...overlooked. I am sure

> there was a reason your question wasn't answered. If

> it were me I would post it again. We know each other

> in this group by name only. There couldn't be any

> malacious intent involved in a question gone

> umanswered. I pass a lot of questions by that I would

> like to comment on because there are other qualified

> people here other than myself that are extremely

> knowledgable.

>

> Do ask the question you asked before again & I am sure

> you will get a reply...instead of just assuming you

> are being ignored. If I can answer it I will do my

> best. This is really a great group!

>

>

[Guest guest]

Dear Walkin Woman

I am sorry that you feel this way, but did you not express this

sentiment only a few weeks ago, and indeed didn't I reassure you in the

chatroom. You will see that we have many messages, and do try to read

as many as possible. But...we as moderators are battling this disease

too, and a case in point, I have recently been hospitalized, had a nasty

run of viruses, and now have had a death in the family, which has kept

me away from the board for longer than I would like.

If you would like to ask your question again, I will personally make

sure I answer it, or if not ask someone else to comment. You are not

alone as I thought I had explained, but in reality, we simply cannot

offer a one to one service as much as we would like to.

If you do decide to go elsewhere, good luck to you, and I hope your

condition remains stable at least, but in my opinion this is the best

group by far on the net.

Best wishes

UK Moderator

Re: (unknown)

I wish you'd give this group another chance. Most of us read

everything, but

if we find we have no insight we don't post. I do believe the

moderators do

a great job of replying, though, and maybe your post was overlooked.

Please try again-I think this group can help.

In a message dated 3/20/03 2:40:19 PM Central Standard Time,

rahdjm@... writes:

<<

> When I was diagnosed I looked all over for a support group. I felt

so

> alone. When I found this group I thought I finally found some help,

> but I guess not. I have never felt welcomed here at all. Twice now

I

> have asked questions and no one answers me. Once CC from Idaho seen

> what I had asked and she asked it again and was answered right

away.

> I wish you all luck with this disease. I will go find some support

> elsewhere. >>

[Guest guest]

Dear Walkin,

I too would like to keep you in the group. I have recieved much in the way of

help from this group and know that if you stay, you will too. I don't know that

every time I post someting that I recieve a reply, but I do for the most part.

I don't always replay to all of the postings, but just the ones that I feel that

I have something add or feel that the comment would be cogent. Sometimes I just

like to be an observer, because of time restraints or where I am when I read the

email. i sometimes read them on line from school during my lunch, when students

are staying in for misbeharior. I cannot seem to reply on line. It doesn't go

through. If I have read from school, I may not reply when I get home. Hopw

that some of our encouragement and replies willget you to stay with us.

(unknown)

When I was diagnosed I looked all over for a support group. I felt so

alone. When I found this group I thought I finally found some help,

but I guess not. I have never felt welcomed here at all. Twice now I

have asked questions and no one answers me. Once CC from Idaho seen

what I had asked and she asked it again and was answered right away.

I wish you all luck with this disease. I will go find some support

elsewhere.

[Guest guest]

I've never had an MRI, Lori. I'm guessing it could show some abnormalities,

if you have some that could be detected by a kidney ultrasound (and this can

appear fairly early on in kidney disease). It's possible your kidneys might

have shrunk a bit, and the cortexes will not be normal.

But, let us know how it went after you've had it. It will be interesting to

learn what they see, kidneywise.

Pierre

(unknown)

> Hello, I am going to have an MRI tomorrow to see what is causing my

> back pain. Has anyone out there had an MRI, and if so will my

> kidneys look at all different on the MRI just for the mere reason

> that I have IgA Nephropathy? I just want to be forwarned if that is

> a possibility, because some of the doctors are not extremely familiar

> with IgAN. Lori

>

>

>

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

> home page:

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

> 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]

No problem. We all had to learn at some time.

Pierre

(unknown)

> Sorry I did not put a subject line on the e-mail I just posted. I'm

> kinda new at this e-mail thing. I pretty much don't know what I am

> doing so please bear with me. Lori

>

[Guest guest]

Yes Lori I have had two MRI's on my spine, which shows abnormal

degenerative wear on my mid thorassic spine. The pictures I have mind

you are of what can only be described as looking like slices of bread,

it does not take large shots, it is done as a slicing process, thus

ensuring every part of the spine is in view of the consultant. They

tend not to take much notice of other parts of your body, concentrating

on what they have been asked to look at, unless something is glaringly

abnormal no comment is usually made, well here in the UK. I have only

ever had concentrated ultrasound and xray on my kidneys and two

renograms which did show up an increase in size of my right kidney, I

think the MRI would pick up more intricate details if this is what they

were scanning.

Good luck ok, and I too will be interested to know what they have to say

about your back, and your kidneys if they mention them.

Best wishes

UK Moderator

Re: (unknown)

I've never had an MRI, Lori. I'm guessing it could show some

abnormalities,

if you have some that could be detected by a kidney ultrasound (and this

can

appear fairly early on in kidney disease). It's possible your kidneys

might

have shrunk a bit, and the cortexes will not be normal.

But, let us know how it went after you've had it. It will be interesting

to

learn what they see, kidneywise.

Pierre

(unknown)

> Hello, I am going to have an MRI tomorrow to see what is causing my

> back pain. Has anyone out there had an MRI, and if so will my

> kidneys look at all different on the MRI just for the mere reason

> that I have IgA Nephropathy? I just want to be forwarned if that is

> a possibility, because some of the doctors are not extremely familiar

> with IgAN. Lori

>

>

>

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

> home page:

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

> 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]

Lori don't worry about that, you should have seen the goofs I made when

I first started using forums, highly embarrassing sometimes, so yours is

a minor problems, we understand we have all been there.

Best wishes

(unknown)

Sorry I did not put a subject line on the e-mail I just posted. I'm

kinda new at this e-mail thing. I pretty much don't know what I am

doing so please bear with me. Lori

[Guest guest]

No, the kidneys typically don't look any different in

patients with IgAN. I've been through all the MRI

stuff as well, but there were no abnormalities that

showed up on it.

--- ldanuloff wrote: > Hello, I

am going to have an MRI tomorrow to see

> what is causing my

> back pain. Has anyone out there had an MRI, and if

> so will my

> kidneys look at all different on the MRI just for

> the mere reason

> that I have IgA Nephropathy? I just want to be

> forwarned if that is

> a possibility, because some of the doctors are not

> extremely familiar

> with IgAN. Lori

>

>

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