Scared

November 30, 1998

Hi Anne,

I just had an EMG done a week or so ago. I've copied part of an e-mail I sent

out detailing what's involved with the EMG (electromyograph).

There's two parts to the test.

The first part uses electrodes. They " zap " you with different levels of an

electrical pulse and measure the time it takes to reach sensors that are

placed on different parts of your body. This is how they tested me -- the

sensors were placed on my hand and fingers and the electrode sends a current

from my upper arm, elbow and other parts of my hand. They did the same type

of thing to my leg. The longer it takes to reach the sensor, or if it doesn't

reach the sensor at all, tells them there's nerve damage. This part of the

test doesn't hurt, but it does feel really strange. The doctor told me its

the same type of shock a dog gets from a collar with one of those electrical

fences.

The second part uses a needle. The needle is placed at several points in the

body, for me it was two spots around my ankle, my shin, thigh, lower back,

shoulder, upper arm, below my thumb, and on the fatty part of my hand below my

pinky (I think there were a few more, but those are the ones I remember).

First they listen to the nerves, if there's a buzzing or rattling type of

noise, this means something's wrong. Next they test how the nerves conduct

the messages sent by the brain. I had to move my hand/foot, or cause pressure

by pressing against his hand to test this. This shows as waves on the

machine. There's certain patterns that are normal, and anything out of the

range or unusual tells them there's a problem.

Another good thing about this test was that I got " preliminary " test result

while he was doing it. We all end up waiting weeks for test results, it was

nice to know right away. The test is alittle painful. But once it was over,

so was the pain. There was a discussion about this last week on the list, and

it seems we all tolerate it differently. But I hope it's easy for you. I was

glad to have the test done because it showed nerve damage, which meant I got

new meds that really help with the pain. I hope the tests show something that

helps with your treatment.

I'll be thinking about you on the 8th! Let us know how everything goes!

November 30, 1998

Hi Again,

I had my husband take me for my EMG. For me the test made my arm very tired

(but it didn't hurt). So it was nice to know I didn't have to drive myself

home. Plus the moral support is great to have. But if that's not an option,

you'll be fine. It does sound like you're going to have a busy day on the

8th!

Good luck,

November 30, 1998

To SUSAN:

Thank you for letting me know what to expect. I have a busy day ahead

of me on the 8th. I have to be at that doctors office at 8:30am and I

think the nurse said it should take maybe a half an hour. And then at

12:30, I have an appointment with my regular doctor who gave me the

referral to go there. They said that I will get a brief report to take

to my doctors until the full results come in.

Your right, at least they let us know something. So like if they zap me

and I feel it, I need to let them know right away, right? This needle

thing, is it like acupuncture? I am wondering if they will just do my

left arm? I mean that is where the pain is except for my legs.

Sometimes I wonder if I have Lyme because it seems like the same places

tend to hurt alot, like my legs for instance. The arm thing just

started two weeks ago.

I am wondering if I should be going by myself when I get that EMG done.

Thanks alot and I will let everyone know how it goes. Hopefully,

I won't chicken out.

November 30, 1998

Hi Anne,

I am glad dug up her letter from last week about the EMG to share

with you, it was an excellent explanation. I wish I had read it prior to my

exams. Just keep in mind that you will be in our prayers on the 8th. It

sounds as if they are looking for nerve damage to explain the numbness and

pins and needles and pain you are having.

> I am wondering if they will just do my

>left arm? I mean that is where the pain is except for my legs.

You should tell them what areas are bothering you so they can test them

all at once, you would hate to have to go back and get them done at another

time.

>

>Sometimes I wonder if I have Lyme because it seems like the same places

>tend to hurt alot, like my legs for instance. The arm thing just

>started two weeks ago.

When I first got Lyme disease, my worst pains were in my neck, now two

years later I have herniated disc in that area....it just developed and did

not come from any injury or fall, so I definitely think it is from Lyme

disease. When you say your arm hurts, is it in your shoulder area? When I

herx, I get oddball pains all over the place, for instance a bad pain on the

top of my foot that feels like someone is driving a wooden stake through it,

or squeezing vise-like pains in my foot. Or horrible pain in my wrist.

Then they are gone! It really is strange.

>

>I am wondering if I should be going by myself when I get that EMG done.

I went by myself, it only hurts when it is being done, and just for a few

seconds, but if you feel you will be shaken by the experience, do take

someone with you to drive you home.

>

>Thanks alot and I will let everyone know how it goes. Hopefully,

>I won't chicken out.

Don't you dare chicken out, it is not that bad.....you may just say, " Is

that all there is? " when you are done....

Hugs,

Marta

November 30, 1998

Hi Marta, I hope you are feeling much, much better.

Yes, 's explanation was a very good one. I actually understood

what she was saying. *giggle*

My whole arm just ached, and my shoulder area feels like it is out of

whack. My foot, its usually the heel of my right foot, and both my

legs hurt, they feel like their not going to make it sometimes. If you

would kick me right now, they would probably break in two. The pains

that I get are strange...your ok, and then all of a sudden you get a

sharp pain in your leg or knees.

Since my dad doesn't live too far from there, if I feel bad I will go to

his house until my doctor's appointment and lay down there for awhile.

I feel like such a baby. I think it would help if I had a valium before

I went. Too bad I don't have any or know of anyone who does. At least

that would relax me.

Thanks Marta!

Hugs,

Anne

November 30, 1998

Anne I only went to the ER because at that point they had no idea what was

wrong with me, and I feared that it was all related to something backfiring in

my brain. I now would call my lyme doc and see what he could do for me. Take

care and good luck. Keep me posted.

Thanks

Amy

November 30, 1998

Ann, I have my hands and fingers go to sleep. It seems to be connected to my

cervical spine. They did an MRI (painless) and determined that I have bulging

vertibrae that are pressing on nerves that connect to left hand, and

particularly palm and certain fingers. They indicated that I could or should

have surgery to correct this. I have found that a certain pillow (that

japanase pillow with shells or beans in them) can mold to under your neck,

kind of like a neck roll and often releave the symptoms at least temporarily.

With all the other stuff going wrong right now, I can life with pins and

needles in my palm, but if it gets bad, ask your MD for an MRI of cervical

spine. At least its not painful.

Hugs, Gail

December 1, 1998

Anne,

Call your doctor (the one who ordered the emg's) and ask him to rx a few

valium. Tell him you are very anxious about the test. I recently did that

when I had to have 3 MRI's back to back. (It wasn't that bad after all

though.) My doctor called in a rx for three pills, one the night before the

test one the day of, and one for after...it only cost $1.83 for the pills.

The only thing is, then you definitely need someone to drive you for the

test and back. Let me know how you make out. You are not a baby, all of us

get anxious on occasion. As for your shoulder pain, that was the beginning

of my herniated disc, if it continues, ask your doc for an xray, that would

show cervical problems too, mine did.

Marta

>From: Anne Marie <amrhodes@...>

>

>Since my dad doesn't live too far from there, if I feel bad I will go to

>his house until my doctor's appointment and lay down there for awhile.

>I feel like such a baby. I think it would help if I had a valium before

>I went. Too bad I don't have any or know of anyone who does. At least

>that would relax me.

December 1, 1998

Gail, thanks for the info. I will have to remember that if it continues

to get worse. I know what pillow you are talking about, I think its

called or made of Buckwheat. I need to get a special pillow for my

acid reflux too, so maybe I will look into that.

I hope your pains are less now. Hugs and God bless,

Anne

April 5, 1999

Hon,

You are far from hopeless. My husband was on interferon..the depression

was awful. Now that he has relapsed and tried interferon and the pill..the

side effects were worse than the disease..for him. If you can go on

without the interferon..I would give it a shot.

Love,

Carolee

----------

From: Scooby759@...[sMTP:Scooby759@...]

Sent: Tuesday, April 06, 1999 9:15 PM

Hepatitis Conelist

Subject: Scared

From: Scooby759@...

Hi everyone.

I found out I had Hep c about a year and a half ago when I was actively

drinking and ending up in the hospital psych wards for depression and

alcoholism. They must have screened my blood tests and thats how they

found

out.

I have been clean and sober about 9 1/2 months and had a liver biopsy about

a

week ago. My doctor wanted to put me on interferon but just called and

said

she didn't think it was a good idea because of my past history. I was told

I

was " depressed " but not that I was an alcoholic when I was in the hospital.

I abused medication and drank along with it.

Now that I am clean and sober, I feel I am being punished for how I hit

bottom, by not being able to have a chance to get better by taking the

medication. The Dr. says it causes depression and she " doesn't want to

chance it " .

Does that mean I am hopeless?

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April 6, 1999

Hi ,

I was being treated for Depression and Anxiety disorder when I found out

that I have Hepatitis C. There is a chance of depression getting worse if

you are on interferon, but if your psyciatrist knows about the Hep C, he/she

can work with your other doctor on the depression. Since I was on

Wellbutrin, I didn't have any problem with depression while on interferon.

People who are not getting help for depression might have a problem with it.

You could get a little down, just because the inteferon makes you feel sick,

like you have flu symptoms, but they don't last very long. Having to take

the shots three times a week can be depressing, along with all the blood

work and doctor visits that are necessry. But with my Wellbutrin, I didn't

have much problem with depression, just some down days, but nothing serious.

My doctor wasn't really concerned with the depression since I was on medication.

Hang in there.

Marie

At 11:55 PM 4/5/99 -0400, you wrote:

>From: Cherry 2000 <cherry2000@...>

>

>Hon,

> You are far from hopeless. My husband was on interferon..the depression

>was awful. Now that he has relapsed and tried interferon and the pill..the

>side effects were worse than the disease..for him. If you can go on

>without the interferon..I would give it a shot.

> Love,

> Carolee

>

>----------

>From: Scooby759@...[sMTP:Scooby759@...]

>Sent: Tuesday, April 06, 1999 9:15 PM

> Hepatitis Conelist

>Subject: Scared

>

>From: Scooby759@...

>

>Hi everyone.

>I found out I had Hep c about a year and a half ago when I was actively

>drinking and ending up in the hospital psych wards for depression and

>alcoholism. They must have screened my blood tests and thats how they

>found

>out.

>I have been clean and sober about 9 1/2 months and had a liver biopsy about

>a

>week ago. My doctor wanted to put me on interferon but just called and

>said

>she didn't think it was a good idea because of my past history. I was told

>I

>was " depressed " but not that I was an alcoholic when I was in the hospital.

>I abused medication and drank along with it.

>Now that I am clean and sober, I feel I am being punished for how I hit

>bottom, by not being able to have a chance to get better by taking the

>medication. The Dr. says it causes depression and she " doesn't want to

>chance it " .

>Does that mean I am hopeless?

>

>------------------------------------------------------------------------

>Share the wealth!

>http://www.ONElist.com

>Tell a friend about ONElist's 115,000 free e-mail communities!

>

>Attachment Converted: c:\mariek e-mail\attach\WINMAIL9.DAT

>

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>

April 6, 1999

Hi ,

When I was diagnosed 6 years ago, the doctor wouldn't treat the Hep C

because of my history of depression. My primary

doctor kept an eye on my depression for 1 1/2 years, at that time the

doctors decided that my depression was in control and started me on

Interferon. I did have to increase my antidepressants

while on Inf, but I am doing fine.

Hang in there.....You are not hopeless.

hugs,

Judy M

November 6, 1999

Well, today is not a good day for me. I am extremely down in the dumps after

calling the lab and finding out that my ALT, AST and GGT are slightly

elevated now after weening off the predisone. I guess I know what that

means. I will have to up the dosage again, which really ruins my weekend. I

was diagnosed in July with AIH and started taken the meds in July. All has

been normal until now. I wonder if this is going to be the course I'm going

to take where I'll always have to be on high doses of the pred. I was almost

in tears as I hung up the phone with the lab. I just want to be NORMAL!!!!

I am sorry I am griping so much. I just need to get it out of my system.

Geri, I read your comment about not worrrying about things in the future that

haven't even happened yet. I really needed to hear that. I am the world's

worst about worrying about tomorrow today. I have always been that way. I

guess that's why it is so ironic that I have this disease where there is no

predictiability.

Thanks for listening

Audra, AIH

November 6, 1999

Dear Audra:

Whether or not they increase your prednisone again will largely depend on

just how elevated your enzymes are. If they are only up a little, maybe the

doctor will wait and see if they go up any more. If he does suggest starting

prednisone again, ask if you can start at a low dosage, to see if you will

respond to that, instead of starting again a 10 or 20 mg. Hang in there!

Take care!

Kathy (AIH)

Seattle area

November 6, 1999

Kathy,

I am currently on 10 mg of pred and have been weening off of pred the last

couple of months. My enzymes are just slightly elevated. I'm thinking this

means back up to 15 or 20 again.

Audra, AIH

November 6, 1999

Audra,

It could mean going back up...or it could mean staying where you are...or it

could mean a slower taper. You and your doc have to weigh the risks of

slightly elevated enzymes vs prednisone. Keep in mind that at 10mg and

below, the bad effects of prednisone are at a minimum. Your doc may opt for

a slight elevation and followup with a bx to see how much, if any,

additional damage is being done to your liver.

Don

AIH Minneapolis

November 6, 1999

Audra,

It could mean going back up...or it could mean staying where you are...or it

could mean a slower taper. You and your doc have to weigh the risks of

slightly elevated enzymes vs prednisone. Keep in mind that at 10mg and

below, the bad effects of prednisone are at a minimum. Your doc may opt for

a slight elevation and followup with a bx to see how much, if any,

additional damage is being done to your liver.

Don

AIH Minneapolis

November 6, 1999

My doctor had me go off prednisone after about nine months and I had to

go back on immediately as the enzymes were shooting higher. The second

time he had me go off, I asked him about increasing my Imuran. He

increased it from 75 mg per day to 100 mg and I got off successfully. He

now has me going back to 75 mg Imuran and the AST is slightly up. I will

know more next month when I get my blood tested again.

I recall someone in this group quoting Dr. Czaja at Mayo as saying he

keeps patients on prednisone for two years before he starts withdrawing

it. Anyone else remember something like that??

ADilli5783@... wrote:

>

> From: ADilli5783@...

>

> Well, today is not a good day for me. I am extremely down in the dumps after

> calling the lab and finding out that my ALT, AST and GGT are slightly

> elevated now after weening off the predisone. I guess I know what that

> means. I will have to up the dosage again, which really ruins my weekend. I

>

< <rest of note snipped> >

November 6, 1999

My doctor had me go off prednisone after about nine months and I had to

go back on immediately as the enzymes were shooting higher. The second

time he had me go off, I asked him about increasing my Imuran. He

increased it from 75 mg per day to 100 mg and I got off successfully. He

now has me going back to 75 mg Imuran and the AST is slightly up. I will

know more next month when I get my blood tested again.

I recall someone in this group quoting Dr. Czaja at Mayo as saying he

keeps patients on prednisone for two years before he starts withdrawing

it. Anyone else remember something like that??

ADilli5783@... wrote:

>

> From: ADilli5783@...

>

> Well, today is not a good day for me. I am extremely down in the dumps after

> calling the lab and finding out that my ALT, AST and GGT are slightly

> elevated now after weening off the predisone. I guess I know what that

> means. I will have to up the dosage again, which really ruins my weekend. I

>

< <rest of note snipped> >

November 6, 1999

Audra

I know how you feel about just wanting to be normal. Predisone and

imuran have destroyed my body, it's so bad that I'm embarrassed to be

seen in public, even by my doctors. My body even though I'm now loosing

weight still are getting these stretch marks and are now climbing up

past my belly button. i got facial hair, now gone thanks to entocort,

and at being diagnoses at 23 I lost allot of my 20's I believe.

Even though today at 27 i go out and pretend that it does not bother me

(my appearance it really does) I know longer try to pretend i can keep

up to my friends. My days off work are spent thinking about doing house

work, and the day prior to my work day is spent in bed. I get really

angry when one of my staff says they can't come in cause the have a sore

body part, or they think they are getting a cold. I get mad when a

staff young and healthy gets hit by an individual in a controlled

environment and takes a week off of work for stress. last week I got

attack in my vehicle while driving and I'm afraid of taking one moment

off because maybe all get fired because of my health. my job pays my

bills along with all my medical and i can not loss it.

I got a call from my work saying there is a rumor going around that I'm

dying and will not be coming back??? my response was I hope I don't

look that bad??

So now my hr. at work have changed because people feel safer when i'm

there?? so hrs are 3-11pm which will be a challenge not to fall asleep

at 930??

Sometimes I feel if i lose my job I have lost the fight with aih,

because it has taken another " normal thing away " .

When I started to write I thought I try to cheer you up, opps failed at

that, sorry. I must have had to vent. thanks for listening

Sorry

November 6, 1999