progression

[Guest guest]

In regards to the progression of AIH, I am going to cite some

material from Dr. Palmer's Guide to Heptatitis Liver

Disease: What you need to know. Everything that I have ever read

in this book or online says that AIH is a chronic and progressive

disease.

" The goal of AIH is to ameliorate symptoms, to decrease the

inflammation of the liver, to induce a long-term remission of the

disease, and to prevent progression to cirrhosis. When

treatment is successful, people have a normal life

expectanancy. " (Plamer, 187)

" People who are appropriately and agressively treated generally

have a prolonged survival time. Treatment may reduce the

chances of developing cirrhosis or at least slow its progression.

Some researchers have shown that in certain people, treatment

can actually reverse liver scarring. Studies have also shown that

people successfully treated have a life expectancy similar to that

of the general population, even if cirrhosis was present at the

time AIH was initially diagnosed. During the first three years of

therapy, people with AIH have about an 11 percent probability

each year of progressing to cirrhosis. After the three-year period,

they have a 1 percent per year chance of developing cirrhosis.

People with severe AIH who do not receive treatment have only

about a 30 percent chance of surviving another five years. It has

been shown that many of these people will develop cirrhosis

within two years of their diagnosis. Any liver disease that leads to

cirrhosis may potentially also lead to liver cancer. People with

AIH and cirrhosis are at increased risk for the development of

liver cancer. Fortunately, the incidence of liver cancer among

people with AIH is much lower than it is among people with liver

disorders such as hemochromatosis or chronic viral hepatitis.

People with AIH in whom the development of cirrhosis is

prevents by successful therapy will not be at risk for liver cancer. "

(Palmer, 195)

If you do not have a copy of this book, I would recommend that

you get one. It has an entire chapter on AIH, its diagnosis and its

treatment. The more you know about AIH, the more you can work

with your doctor in its treatment. Another good reference book to

own is Dr. Worman's The Liver Disorders Sourcebook.

Both books can be purchased from Amazon.com,

& Nobel.com or any other book store. May public libraries

also have this book on their shelves.

Good luck in your research and in reaching an understanding of

AIH.

[Guest guest]

Hi ,

I definitely think it does. I had to move 3 times in 2 years because everyone

was selling in the Keys, then hurt my back at work, haven't worked in over a

year and now when I try to do anything even simple, cleaning, etc...it takes a

major toll on me and takes days to get over it.

For example...and I was going to ask the same question to someone else...on

November 29th I got a letter from the state saying I was once again denied for

disability, this being the second time (Gretchen I hope you're reading this

because I need to ask you some questions) and I never did get a lawyer and did

it by myself, my social worker helped the second time to no avail.

Anyway, I buried my head in my pillows for a week because after 13 months of

paperwork I gave up and I'm also waiting on January 12th for my workmens comp

case, which does look good, I think (but they have even bumped up court dates

over and over again, so I just sit and wait)

Also, I've got Medicaid and my 2nd tooth from the front has a bad cavity in it

and ready to fall out. and in the Keys it's really hard to find any doctors or

dentists that take medicaid which means it's a 2 hr drive to Miami for anything

and when I did call a number, the woman said, " Lady, call on Monday...I can't do

anything for you! " (I can't explain how and what she came across as except a

total bitch..and wasn't about to go to them).

Stay with me now!! it gets better.....

NOW....So I finally called my social worker and she is a sweetie pie and whipped

out a lawyer's phone number for disability and also gave me a dentist's number

which is only 30 miles away....So THEN, I felt like a million bucks and decided

to clean house and rearrange things.

WELL, in the middle of the night both my legs cramped up so bad I screamed and

I scared the hell out of Jeff. He's gone through cramps in my legs before, but

nothing like this. I told him to please help me get up. I had to walk to work

out the cramps. After 20 minutes or so, it was good enough where I could to back

to sleep. THEN, when I woke up in the morning, every single tiny muscle in my

body was killing me and could barely walk. I felt so good from the good news,

that I totally overdid my body. That was 4 days ago.

I have an appt with a therapist on Monday, my 2nd one, and tonight I totally

went nuts because my back and legs were locking up again. So, get this, I had a

major crying jag and proceeded to beat up my feet! I'm not kidding you. I'm

pretty tough, but tonight I lost it. I literally beat on my lower legs and both

feet, since I can't feel them anyway, I was so pissed my body is doing this to

me I kept on hitting them as hard as I could. (I'm getting tears in my eyes

thinking what I did, and on the lighter side...wondering what the hell the

bruises are going to look like...lol , a little bit??)

So, your question about a million years ago....YES, I think stress definitely

takes it's toll. I've always been tough and able to do what I had to whether it

be chores or swimming or walking, now I'm screwed. I shouldn't say that at

all, what I mean is I have to get a grip on things and take it from there. I

didn't mean to say it doesn't take it's toll, I'm at the point where I have to

know how to deal with it. That's my own personal thing right now. And when I

had my first visit with the therapist, I felt ugly, skinny, and I noticed I kept

my hands very clenched up and didn't say too much.

She's very busy, but even called 2 times after that visit to get me in because

of her cancellations, which I thought was nice and she must think I'm a nut

job!! (only kidding again about the nut job...but both my parents tried

suicide, my mother did, my father tried 2 times, but still died when I was 16. )

Now I know what I'm going to say when I get there on Monday. My parents died

before I was even 20 and no one showed or told me how to get old. Do you

understand what I mean by that? My dad was only 40 and my mom 44, so I don't

know what to do after those ages and I'm 46. Sounds very odd, but I don't know

where to go from here especially being hit with CMT.

My dad walked with a cane in his 30's and didn't work because he got disability

while he was a lineman (climbed poles for the Electric company and the bucket

truck went screwy and knocked him out and he fell). He had all the symtoms of

CMT, but noone talked about their health, bills, anything...

Well, now that I just started a short novel, I hoped I helped. Actually, it

helped my spilling this out of my system. I've always been in control of my life

as tough as it may be, but when it comes to health problems and you can't

control them, that's when it sucks.

Love to All and write soon.

Take care,

PS....Gretchen, I need to talk to you badly!! Please. Pleasant dreams to

all...

[Guest guest]

,

It may have started with the car accident but I would think surgery would stress

your body out also. I react to stress in CMT weakness and progression.

[Guest guest]

Hi ,

Wish I had more info for you concerning your question. All I can tell

you is that I read that falls, illness and accidents can accelerate the disease.

I was not given any other particulars as to why. Sorry that I could not help

more.

Teri

[Guest guest]

Hi ,

I'm not sure if you were asking about " car accidents " or " stress " in

general as related to CMT progression. But I will share my

experience.

Following a car accident, and the medical necessity to be on

a 'medical leave' from work for 6 months, I was stressed. I had

emergency surgery also. Stressed primarily on physical and emotional

levels. I slept alot, moved back to my parents home (resigned the

job) in order to care for myself. Resigning from the job came as a

result of my doctor's suggestion related to how I must be #1 if I

didn't want to suffer long term. On top of that, the medical bills

rolled in, ad infinitium.

At the time, it seemed to me that CMT had been exacerbated. It took

about a full year for me to get my " snap " back, but it did come

back, and then it seemed that my CMT symptoms were once again in the

background. I was back to daily work, exercising, and enjoying life.

I was recharged without any progression long term.

Surgery on our bodies, of any kind, can induce stress. Your multiple

surgeries this year have created stressors, plus the other issues in

your life.

The holiday season is a major stressor, not only for those of us

with CMT, but for people in general.

Stress and 'potential' stressors is precisely why I exercise, get

enough sleep, and most important to me is that I meditate.

~ Gretchen

[Guest guest]

Thanks for the effort, Teri.

[Guest guest]

Hello Everyone,

My question for you is can anyone predict progression rate in CMT? I

have noticed in the past two years that my legs have gotten weaker,

more cramps, muscle twitches and burning sensations. My medication has

been increased many times. Each time it is increased I notice a

difference for a few months then it seem that the symptoms come back

again. Also the fatigue level has seemed to definately decline. My last

EMG showed that I had 30% of my motor skills. Does this all mean that

the CMT is definately progressing? Also, can it ever be seen what the

future may hold or does it depend on the individual and the sex of the

person?

What about someone who is male and has CMT and his symptoms are more

severe in the deformity issues and is only a teenager? Any insights or

documention would be appreciated.

Again, thanks to everyone.

Teri

[Guest guest]

Hi Teri,

There is no doctor, no researcher, no scientist, no one, that

can " predict " anyone's progression. Now, there are those that have

tried, in my CMT life, at age 37, a neurologist told me I'd be

living in a wheelchair full-time. Long story short, I am 54 now, and

no where NEAR life in a WC. Matter of fact the more I pay attention

to my exercise program, nutrition and diet, and get quality rest,

CMT for me really doesn't seem to exist. I said this earlier, but at

54, I feel better than I did at 34, or even 44!

We are all different in types of CMT, gene mutations, and thus our

genetic codes are all different too. No one has ever come up with

research that supports a " certain type of CMT or symptoms " is worse

or will progress faster than another.

Bear in mind that I was diagnosed as a child and have had a lifetime

to manage CMT along with a score of neurologists and other docs and

supplements, one surgery, and always exercise of some sort.

I don't know what medication you're taking, but changes in

medications may affect side effects of the meds and also may effect

how your nerves/muscles respond to it.

Men and women with CMT can be affected equally; CMT is not gender

specific. People in the same family with the same type of CMT May

experience different symptoms too.

~ Gretchen

~ Gretchen

[Guest guest]

Lucky for you! Don't get pregnant. I have seen the most significant

progression of my disease since the birth of my son. Granted it didn't help

that I stopped exercising during my pregnancy and for about 2 years after he was

born! I have started again but my first month of exercise was really difficult.

I lost so much strength in my thighs which is making stairs kind of difficult.

But I am back on track now and praying that with faithful exercise that I can

get most of that strength back. Hope that didn't sound too negative. Just

wanted to reinforce the importance of exercise.

Thanks!