question

[Guest guest]

Hi Crew,

My husband was diagnosed with nf2 about 4 years ago. His mother had

a brain tumor removed after she fell in the shower and they did a cat

scan. No mention of nf2. My brother in law had pain in his left arm.

They couldn't find where it was coming from. They did an MRI and

discovered what they called a lesion. The neurosurgeon told him to

leave it alone. He got a second opinion. The neurosurgeon told him

it was cancer and he would die. He had it operated on immediately.

Later he found out that he had nf2. His mother was tested and came

out positive for nf2. My husband then went for testing again

positive. His other 2 brothers refuse to go. My mother in law is 63

and still has her hearing. My brother in law is 32 and my husband is

39. They all had some symptoms but they were never explained. Once my

husband found out he got much worse. Ignorance may be bliss. Love

you guys.

[Guest guest]

Hi Crew,

My husband was diagnosed with nf2 about 4 years ago. His mother had

a brain tumor removed after she fell in the shower and they did a cat

scan. No mention of nf2. My brother in law had pain in his left arm.

They couldn't find where it was coming from. They did an MRI and

discovered what they called a lesion. The neurosurgeon told him to

leave it alone. He got a second opinion. The neurosurgeon told him

it was cancer and he would die. He had it operated on immediately.

Later he found out that he had nf2. His mother was tested and came

out positive for nf2. My husband then went for testing again

positive. His other 2 brothers refuse to go. My mother in law is 63

and still has her hearing. My brother in law is 32 and my husband is

39. They all had some symptoms but they were never explained. Once my

husband found out he got much worse. Ignorance may be bliss. Love

you guys.

[Guest guest]

Hi Crew,

My husband was diagnosed with nf2 about 4 years ago. His mother had

a brain tumor removed after she fell in the shower and they did a cat

scan. No mention of nf2. My brother in law had pain in his left arm.

They couldn't find where it was coming from. They did an MRI and

discovered what they called a lesion. The neurosurgeon told him to

leave it alone. He got a second opinion. The neurosurgeon told him

it was cancer and he would die. He had it operated on immediately.

Later he found out that he had nf2. His mother was tested and came

out positive for nf2. My husband then went for testing again

positive. His other 2 brothers refuse to go. My mother in law is 63

and still has her hearing. My brother in law is 32 and my husband is

39. They all had some symptoms but they were never explained. Once my

husband found out he got much worse. Ignorance may be bliss. Love

you guys.

[Guest guest]

I can't imagine going through it as a mother. I hope I don't have

to.

Both of our children have not been diagnosed

Hugs,

[Guest guest]

Sheryn

Here they pay people from Southern Ontario all expenses, travel, hotel, and meals and cab to and from hospital. In Northern Ontario they pay travel only if required to go to Southern Ontario. It is not fair but .........We have specialist who come to Northern Ontario towns about once a month or every second month and see patients. A doctor I know, a rheumatologist, she has an office in Toronto and in Sault Ste. Marie. She comes to S.S.M. once a month Friday to Monday and has a full case load.

It is better travelling to Winnipeg than Toronto. Closer to home and not as large a city.

Randy

QUESTION

Randy,

Why do you say an ADA will never happen in Canada?

Barbara B., NYC who works with some of the people who worked to pass the ADA.

[Guest guest]

Sheryn

Here they pay people from Southern Ontario all expenses, travel, hotel, and meals and cab to and from hospital. In Northern Ontario they pay travel only if required to go to Southern Ontario. It is not fair but .........We have specialist who come to Northern Ontario towns about once a month or every second month and see patients. A doctor I know, a rheumatologist, she has an office in Toronto and in Sault Ste. Marie. She comes to S.S.M. once a month Friday to Monday and has a full case load.

It is better travelling to Winnipeg than Toronto. Closer to home and not as large a city.

Randy

QUESTION

Randy,

Why do you say an ADA will never happen in Canada?

Barbara B., NYC who works with some of the people who worked to pass the ADA.

[Guest guest]

Sheryn

Here they pay people from Southern Ontario all expenses, travel, hotel, and meals and cab to and from hospital. In Northern Ontario they pay travel only if required to go to Southern Ontario. It is not fair but .........We have specialist who come to Northern Ontario towns about once a month or every second month and see patients. A doctor I know, a rheumatologist, she has an office in Toronto and in Sault Ste. Marie. She comes to S.S.M. once a month Friday to Monday and has a full case load.

It is better travelling to Winnipeg than Toronto. Closer to home and not as large a city.

Randy

QUESTION

Randy,

Why do you say an ADA will never happen in Canada?

Barbara B., NYC who works with some of the people who worked to pass the ADA.

[Guest guest]

Subject: Re: QUESTION

Randy,

Seems so many in the northern parts of our country suffer lack of medical fairness. I can certainly see why you would consider Winnipeg......

Sheryn

____________________________

Sheryn

Here they pay people from Southern Ontario all expenses, travel, hotel, and meals and cab to and from hospital. In Northern Ontario they pay travel only if required to go to Southern Ontario. It is not fair but .........We have specialist who come to Northern Ontario towns about once a month or every second month and see patients. A doctor I know, a rheumatologist, she has an office in Toronto and in Sault Ste. Marie. She comes to S.S.M. once a month Friday to Monday and has a full case load.

It is better travelling to Winnipeg than Toronto. Closer to home and not as large a city.

Randy

QUESTION

Randy,

Why do you say an ADA will never happen in Canada?

Barbara B., NYC who works with some of the people who worked to pass the ADA.

[Guest guest]

Subject: Re: QUESTION

Randy,

Seems so many in the northern parts of our country suffer lack of medical fairness. I can certainly see why you would consider Winnipeg......

Sheryn

____________________________

Sheryn

Here they pay people from Southern Ontario all expenses, travel, hotel, and meals and cab to and from hospital. In Northern Ontario they pay travel only if required to go to Southern Ontario. It is not fair but .........We have specialist who come to Northern Ontario towns about once a month or every second month and see patients. A doctor I know, a rheumatologist, she has an office in Toronto and in Sault Ste. Marie. She comes to S.S.M. once a month Friday to Monday and has a full case load.

It is better travelling to Winnipeg than Toronto. Closer to home and not as large a city.

Randy

QUESTION

Randy,

Why do you say an ADA will never happen in Canada?

Barbara B., NYC who works with some of the people who worked to pass the ADA.

[Guest guest]

Thanks . I had forgotten about the drinks and food I spill on myself. I am so glad you understand.

Please let us know about the test. My heart is with you....

what is a break thru seizure? different?

Carol

Re: Birthdays, Welcome, and question (whew!!)

Hi Carol,

Sorry I am so late in replying. I have the same problems. Things slip out of my hands. I have noticed my hand/eye co-ordination getting worse. I often wear a bib to eat. I have been having more "break thru seizures". Next week, I go for a 23 hr EEG to find out what is wrong.

Blessings,

~<><~~

[Guest guest]

Carol,

When you tried to tell me what you were experiencing, I knew exactly what you meant.

What are "break thru seizures"? Well, I don't even know if that is the scientific name, but it is what the doctor calls what I have been experience. I did have the gran mals in the past.

These new things are - unable to speak at times (just garbles come out and not words), I will repeat words like an old record, write words/phrases repeatedly, on a couple of occasions my legs did not want to move, and few times I have had to tell myself to swallow, my hands sometimes shake uncontrolably and so do my lips.

Never a dull moment.

Blessings,

Re: question

Thanks . I had forgotten about the drinks and food I spill on myself. I am so glad you understand.

Please let us know about the test. My heart is with you....

what is a break thru seizure? different?

Carol

[Guest guest]

- I can see where you would get confused by reading the backs of the

packages. I think when the rules say protein first, they mean like you should

always eat something that is a protein first at your meal, your meat, or some

cheese or a handful of nuts, you know, things that are like ALL protein. Then

there are the foods that are ALL carbohydrates - breads, crackers, cereals, etc.

Avoid those if possible, or only eat a little bit with some protein. Then you

have combo foods which are probably in the middle somewhere. I've found a

cereal that I like to eat dry for a snack. It's called Kashi Go Lean Crunch!

It is all natural granola type and it's fairly high in sugar. But it also has

soy protein in it. I have dumped on it when I've over indulged and vomited when

I overate one day. I consider the protein in this helping to overcome some of

that sugar content, and it still being a healthier choice than say plain

crackers. So, I guess my point is that you have to figure out what works for

you. If you supplement with protein drinks, you don't have to always eat

protein first. You can indulge in some fruit once a day, eat salads, or the

occasional carbs. I hope I've helped and not confused you more. I kinda

started rambling. Oh well. Take care.

Jeanne in WI

Age 39

Open RNY - 5/21/02

Dr. Chua

5'8 " - 314/220/150-175

[Guest guest]

, how about something like this (you'll have to see how

you body reacts and pick what's best based on what it does!)

90-120g of protein a day (food and drinks)

6g of sugar a meal

30g of carbs a day (hard to do but possible, and maybe you

want more)

Cheers!

Sharon in D.C.

question

Ok, I have a question....

I know we are to get as much protein as possible....

I know we are to have as little sugar and carbohydrates as

possible.....

So what do we go for first the more protein or the less

sugar /carbohydrates?

And what was the total (or most) sugar gr. / carbohydrates

grs. we are to have in a day?

Thank you so much...

I was reading the back of packages in the store yesterday

and didn't know what to buy the more or less of...

from PA

[Guest guest]

I had to have a transfusion about five days post

surgery due to low starting hemo level and post

surgical blood loss....but then again he left a six cm

tumor behind...OOOPS

e

--- sbstraus@... wrote:

> Question :

> I am looking at potential myo. doc's (both R.E's)

> in my area.... and I might fly out to see Dr. Indman

> for his opinion ...

> I am asking : Of 10 women, how many will need a

> blood transfusion ? I also ask about microsurgical

> techniques.

> The nurse told me he only used microsurgery for

> FERTILITY patients.... ?

> The nurse also said the doc. told her that only 1

> out of 10 would need blood.

> I thought the best myo. surgeons NEVER have

> significant blood loss during surgery.....??

> True ?

> The other R.E. doc. I haven't asked yet, but will.

> That one does NOT EVEN do hysterectomies.

> I can always go out to Dr. Indman in CA., (who I

> would prefer), but the doc's in my area would save

> me $$ since I would not have to stay in CA. , plus

> my insurance would cover more.

> Thanks,

>

[Guest guest]

I had to have a transfusion about five days post

surgery due to low starting hemo level and post

surgical blood loss....but then again he left a six cm

tumor behind...OOOPS

e

--- sbstraus@... wrote:

> Question :

> I am looking at potential myo. doc's (both R.E's)

> in my area.... and I might fly out to see Dr. Indman

> for his opinion ...

> I am asking : Of 10 women, how many will need a

> blood transfusion ? I also ask about microsurgical

> techniques.

> The nurse told me he only used microsurgery for

> FERTILITY patients.... ?

> The nurse also said the doc. told her that only 1

> out of 10 would need blood.

> I thought the best myo. surgeons NEVER have

> significant blood loss during surgery.....??

> True ?

> The other R.E. doc. I haven't asked yet, but will.

> That one does NOT EVEN do hysterectomies.

> I can always go out to Dr. Indman in CA., (who I

> would prefer), but the doc's in my area would save

> me $$ since I would not have to stay in CA. , plus

> my insurance would cover more.

> Thanks,

>

[Guest guest]

, we don't have all the answeres as to what triggers a fibroid

to grow, but I did read a book called, " What your doctor may not

tell you about peri-menapause " and it talks a lot about the over

abundance of estrogen and the imbalance of the 2 hormones, estrogen

and progesterone. To make a long story short, becuase of this

imbalance, we've got to much estrogen in our bodies and not enough

progesterone ( becuase we don't ovulate every month and ovulation

produces the progesterone ) less and less into our 40's. Don't

know how old you are?..... Other things contribute to feeding the

estrogen (which we don't want to do!!!) LIKE, meat that is not

hormone free. The hormones that they use to produce the meat feeds

the estrogen making this imbalance even greater. The book

recommends to only eat natural meat chicken eggs, organic, or grown

without hormones. Also, coffee, organic coffee is best. Organic

everything is best. Dr. Lee (author) also talks about using

natural progesterone cream (only certain brands usually found in the

health food store).

Everthing he said makes so much sense to me. Unfortunately I

tried it all and still eat organic meats eggs and coffee. But after

2 years, my fibroid has in fact grown now to 10 cm. I've had

disturbing symtoms such as terrible bleeding. I reccommend getting

the book. Maybe it would help with you, but unfortunatley did not

help with me. Hope it helps, Jen

> Okay this question is probley stupid. The dr i was seeing said

most firbords if they grow back take years not mouths too grow

back. Looking back on the last 6 mouths the only thing i changed was

the amount of exicsize i do and the way i am eating. When looking at

the risk factors of pepole who most got firbords the one i had was i

was over weight. Okay i was obece at 236. After my frist hytorcop I

said to my self thats it you cant get another firbord your loseing

weight. I Joined a Gym and I started the atkins deit. Also becuse i

was suffering from symotom of polly cystic overan sydrom. I lost

110 lbs. But could the fact that i eat alot of meat have anything to

do with the fact it grew back so fast? Could it be the fact that

the meat has hormons causeing my hormons to go up makeing it grow

back.

>

> She said she thought it was weird becuse i did lose 110 lbs. And

that should have lowerd my estrogon but then could it be the

exicsies or the way i eat. Any one every looked into this?.

>

>

>

>

[Guest guest]

In a message dated 12/9/2004 9:09:38 PM Eastern Standard Time,

ksa2045@... writes:

> is adding .5 grain of Armour each week okay?

> i've been on Armour now for 2.5 months and began to increase .5

> grain/week two weeks ago.

>

we need a bit more info. but adding 1/2 grain EVERY week is not good. but

tell us how much you're on already. once you get up to 3 grains you need to go

much slower...well actually even before that you want to space it out a bit

more to see how your body adapts to the increase.

cindi

[Guest guest]

In a message dated 12/9/2004 9:09:38 PM Eastern Standard Time,

ksa2045@... writes:

> is adding .5 grain of Armour each week okay?

> i've been on Armour now for 2.5 months and began to increase .5

> grain/week two weeks ago.

>

we need a bit more info. but adding 1/2 grain EVERY week is not good. but

tell us how much you're on already. once you get up to 3 grains you need to go

much slower...well actually even before that you want to space it out a bit

more to see how your body adapts to the increase.

cindi

[Guest guest]

In a message dated 12/9/2004 9:09:38 PM Eastern Standard Time,

ksa2045@... writes:

> is adding .5 grain of Armour each week okay?

> i've been on Armour now for 2.5 months and began to increase .5

> grain/week two weeks ago.

>

we need a bit more info. but adding 1/2 grain EVERY week is not good. but

tell us how much you're on already. once you get up to 3 grains you need to go

much slower...well actually even before that you want to space it out a bit

more to see how your body adapts to the increase.

cindi

[Guest guest]

> thanks for your help cindi. i did the armour this morning, went

back to bed, then breakfast, work ... yadayada. i don't know if

its a mind game but i did feel more aware a little earlier at work .

thanks again

kathryn

> i believe the sleep apnea is a hypo symptom. my husband has told

me that i

> don't snore as much now that I'm on Armour. so some of these

things should

> just straighten out with time.

> cindi

>

>

>

[Guest guest]

Hi ,

I would just check with your transplant doctors about a tattoo at this time.

You are on some strong immunosuppresants so soon after your transplant so

it might be better to wait until your doses are lower.

On the pregnancy, my understanding is that a post transplant pregnancy is

possible but it is important to wait a year, and of course it would have to be

monitored by a high risk OB.

How are you doing with the feelings of sadness that were plaguing you last

week? I hope you are feeling better.

In a message dated 2/24/2005 2:15:02 P.M. Pacific Standard Time,

socharmed2@... writes:

Hi all! I was just wondering I saw on here about

people getting pregnant. Can you have a baby while on

all these drugs? My doctor told me that I can't have

anymore children. Won't the drugs do damage to the

baby?

Also, anyone get a tatoo while on these drugs? I

really want to get a small, cute tatoo. I would like a

purple rose and in the stem of the flower I want my

daughters name. Anyone got a tattoo after there

transplant. I am going to ask the doctor tomorrow at

clinc but I was just wondering what you guy's had to

say.

[Guest guest]

Thanks Barb and all who responded. I went and got some test strips and it

showed no blood, and a trace of protein. I don't know how reliable these

strips are, though. I'm going to check his urine for a few days and then

see. At its worst, his protein was only 2 plus, before the biopsy. He's

been on Cozaar since. And he doesn't have IGAN, he has Alports...so I'm

going to wait and see this week. His urine wasn't foamy today, or

discolored...

, mom to Rob, 15

PS I have to apologize for not responding more and being more supportive

of everyone, especially the moms, here lately. Just feeling a bit

overwhelmed in many areas of my life...as I am sure many of you are!!

Again, my apologies....

On Thu, 24 Feb 2005 14:37:13 -0000 " barb_lavalette "

writes:

,

I've only been involved with IgAN for less than a year, but my

doctor told me that if I ever have foamy urine, to call him right

away. He listed these things as important to report immediately:

foamy urine, swelling anywhere on my body or discolored urine. In

my experience so far, I haven't had any of these (I mean since

diagnosis... it was discolored urine that got me to a nephrologist

to begin with). Good luck!

Barb

~~~~~

>

> I have a question, all.

> Tonight I went into the bathroom, and Rob had just finished and

hadn't

> flushed, and his urine, although yellow, looked like the 'foamy

head of

> beer' that I have heard you all describe.

> What does this mean??

> , mom to Rob, 15

>

>

[Guest guest]

Dear ,

It seems to me that the only risk with the tattoo would be to avoid it getting

infected. They use sterile needles, and different (new ) ink for each person-

but I don't know how big the risk of infection is.

If you can do it, and get the doctor's OK -be sure to wash the area carefully

and keep it dry and clean, until it's all healed up.

Some of the immunosuppressives could do damage to the baby- and reversely, the

pregnancy could do damage to your new kidney. There is a lot more blood to

filter when you're pregnant. Then again, your new kidney is healthy.

You may want to talk to an high risk OB/GYN about this. I don't think it would

be impossible, but it would definitely be risky. But do get a second opinion

from a high risk specialist as to whether it's a possibility. It's not

something that you would do now, this soon after transplant- but in , say a year

if everything looks good, could you do it? It's worth the second opinion.

I wrote to you off list about some of the other things,

Best wishes,

-Elisabeth

[Guest guest]

I was told tattoos are a no-no after the tx. Sorry.

Doyle wrote:

Hi all! I was just wondering I saw on here about

people getting pregnant. Can you have a baby while on

all these drugs? My doctor told me that I can't have

anymore children. Won't the drugs do damage to the

baby?

Also, anyone get a tatoo while on these drugs? I

really want to get a small, cute tatoo. I would like a

purple rose and in the stem of the flower I want my

daughters name. Anyone got a tattoo after there

transplant. I am going to ask the doctor tomorrow at

clinc but I was just wondering what you guy's had to

say.

__________________________________________________

[Guest guest]

HI ,

First, thank you for your prayers. No new yet, no sign of life yet, but

the police have escalated it now. Guess they finally decided this is

not a case of boys will be boys. I think if Jim was female, it would

have been on the news before now.

On the edema, Plendil is known to cause edema, but I am not aware of

that with Lisinopril. I took Lisinopril for some time, and never had

swelling. Do watch your sodium intake because that can make the edema

worse.

The ways to get protein spill down are Cellcept, Prednisone and Ace

Inhibitors. I do not know of any other options. I know you are glad

to be off the Cellcept. I was so happy to get off it too.

Let us know what they say in April.

question

I hope everyone is doing well....I wish the rain in the south would

stop.

, any new news on your friend? That must be so hard for his

family.

They are in my prayers.

On another note, I have a question...As per my new nephs in Boston..I

have

stopped taking the CellCept. I haven't thrown up in a week....yippee.

They

have also started me on Lisinopril (?) I have noticed some swelling

in my

feet now. Not too bad, but they are certainly puffy. Not hurting

either......Any thoughts on this??

I was also wondering, are there any other ways to get the protein in

your

urine down? I stopped the Cellcept and don't think they are going to

put me on

Prednisone. Are there any other options that anyone knows about? I

go back

to them on April 4th.

The response they sent me on the fish oil...was to take something

called Max

EPA. I found one at my boyfriends up in NY....EPA of 450 and DHA of

180 in

1 capsule. They were also lemon flavor. I made the mistake of taking

all 8

at one time before I went to bed....they didn't settle well. I will

give

them another try though...this time work my way up to 8 and space them

out.

I remember someone posting a phone number to the Mayo pharmacy.. If

we call

it, could we get the Omacor?

Just curious,