Re: SMA's

[Guest guest]

Hi Cherie

Im sorry you are going through a rough time at the moment. Would you

mind telling me what the numbers were for you ana and asma. Was your

ANA speckled like mine? How did they determine that you have AIH? It

sounds as though you do have lupus especially seeing your biopsy tested

positive for it.

I do have RUQ pain but not LUQ. Im just guessing, but your LUQ could be

many things, maybe liver referred pain. I think the liver stretches to

part of the left side.

Im sorry that like me you are worried about the weight gain, but

please, dont let this stop you from taking effective meds.

Unfortunately there are alot of shallow people which just look at the

outside and not the inside of the person. My boyfriend....actually my

now ex boyfriend is one of them. We just have to be around people who

look at the good in people and are not as shallow.

My prayers go out to you

Elena

--- JB <http@...>,

UNEXPECTED_DATA_AFTER_ADDRESS@.SYNTAX-ERROR. wrote:

> Dear Elena, I test positive for both ANA and SMA's.

> I was told many yrs ago that I probably had Lupus.

> At that time, I showed no ANA's. That is what they

> were

> looking for. The sores I had were biopsied and they

> were definately Lupus. Still don't know whether or

> not I truly have it. But I have the butterfly, plus

> sores on neck, chest, arms etc. and am very

> sensitive to sunlight.

>

> As to SMA's, got them too. I have learned a lot

> thru' this, but only makes me realize how much I

> don't know. Have had no symptoms except fatigue

> until recently. LUQ pain is what got me to dr. Now

> that I've been dx'd w/AIH, NO

> dr. will even address this pain, they will only talk

> about my liver. Until biopsy,

> didn't have a clue what liver pain was. I've noticed

> that a few others have LUQ pain as well, so I don't

> feel so crazy. Can only hope what you read was

> wrong, we'll

> see, I guess.

>

> I'm so new to this , and have a frustration level of

> astronomic to the 'nth power.

> Would be nice to hear what else you read. EG..

> Severe, how?

>

> Finally got an appt. for hepatologist on 6/25. So

> it'd be nice to go armed. I don't think I'll be able

> to take Imuran because of family history of cancer.

> I hate pred. 'cause I was on it another time for

> psoriasis for 2 yrs and gained 40 lbs and a divorce.

> Am probably looking at same thing again if I get

> fat, let alone all other side effects. Really at

> wit's end for treatment, may not take anything. Too

> many consequences.

>

> Let me know what you read. How are you doing?. I

> guess you just got started on meds?

> Cherie jcbray@...

>

===

Elena Pheasant

_________________________________________________________

[Guest guest]

Elena,

My Hepatologist told me that with cirrhosis, the liver actually shrinks, so

(at least in my case) the left sided pain isn't likely to be liver pain.

The left lobe isn't very large even when healthy and if it retracts, it

shouldn't cause pain under the rib cage. But, I haven't been given any

answers yet about what it is, so anything's possible.

Take care,

Geri

[Guest guest]

Geri,

My son Tyler had pain on left side..also bloating..this is before he was

diagnosed with AIH and PSC this past April..He has Crohns and RH so we let

his doc know of pain..it got to the point that he was nauseous and then

couldn't eat at all..Would throw up and pain became worse..Went to ER..they

were amazed when they did xrays..His spleen was huge...It had doubled in

size..was squishing all other organs..He was admitted and watched for

awhile..Hem team came in on this time and checked..Had bone marrow biopsy

....His playlets were 45000 very low..Spleen is holding them all in...He had

to have a spleen guard made and wear it all the time...No physical

sports...the only time he can take it off is if he was just home doing

nothing or sleeping. The spleen is now a bit smaller...but not much..still

no physical anything ,wears spleen in car..

Hope this helps...

Luanne Ty's mom

[Guest guest]

Luanne,

The pain on my left side doesn't bother me all the time, which is unusual I

think. It's right where the band of my bra goes on my rib cage and I've

found that if I take my bra off it relieves it. Also, it relieves the pain

when I'm in bed if I lie on my left side, though it still hurts. It's not

unbearable by a long shot but sometimes it's darned painful. I had an

ultrasound a few months ago and it showed that my spleen was not enlarged

at all. Still, I have this nagging suspician that it's a spleen problem of

some sort. You know how you can sense whether pain has an organic cause

vs. a source that's more surface? I don't feel like something " massive " is

going on internally, but more like I'd feel if there were pressure for too

long in one spot. I did notice that when my diuretics were first increased

and I lost some weight, the pain disappeared.

Your son has a very heavy load to carry for someone so young. Is he taking

all of this well? There must be a problem with conflicts when it comes to

treatment? I feel so lucky that none of our children were seriously ill

when they were growing up. It must break your heart for him.

Take care,

Geri

[Guest guest]

Geri

I'm glad you've had the spleen check out...Beleive me when this happened to

Tyler we had no idea...

Like you said we become very intune to our bodies...Ty suprises his Dr.s with

some of his observations...

Tyler handles this the way a 16 yr old would from what his Dr.s have

said...When he feels good then he will ignore that anything is wrong...Even

when he is tired he will push himself to all the normal...When he gets sick

he will try to push thru it until he realizes this is the time to give in and

rest...He will get upset when the pain gets to be too much...Unfortunately he

has a variety of things that can make him feel down....I've talked to his

Dr.s and they say that his actions of ignoring his illness and trying to be

like his friends in normal...They feel he is very smart and understands

everything...He is careful with the things he eats and drinks...no soda and

drowns himself in water....and luckily he knows the danger of any alcohol

wound be to him....Even my 21 yr old who has Ulcerative Colitis knows to stay

away form that....His friends wanted to take him out for his 21st birthday

and do what I guess he was supposed to do and drink...He let them know out

flat that that was not going to happen...He tours with a performing group all

summer all over the country and he wasn't about to risk that by getting

sick....

Thanks for writing and hope your feeling well.

Luanne Tys mom

[Guest guest]

Luanne,

Kids can be an inspiration. Our grandson was diagnosed with diabetes after

he almost went into diabetic coma, at age 14. Sadly, his parents aren't

very nurturing but listened and learned and follows his diet and

medical instructions carefully. It's not easy for a kid that age to turn

down a soda when he's hanging out with buddies, or to have to stop

everything and eat one of his " small " meals. None of it is easy on kids

that young, but they take it in their stride often better than most adults.

What saddens me is that they have to learn to do this. They're children

for so few years.

Ty sounds like a terrific young man. Are his activities severely limited

or only limited by how good he feels? If he gets tired easily, he probably

fits in with other kids who seem to confuse boredom with being tired, at

least that's what I used to observe. The pain is another matter entirely.

It's difficult to imagine having chronic pain while growing up.

is 16 now and he's already had to deal with drinking. I hope he

doesn't, but he's mature for his age and his friends are all closer to 20

and 21. I guess he handles it because he knows the price he'd have to pay

if he were to try too hard to be " one of the guys. "

I can only imagine the ongoing anxiety you must feel. None of our children

were seriously ill until our oldest was diagnosed with Lou Gehrig's

disease. Even though he was a grown man when it happened, the grief and

anxiety we felt was almost too much to bear. And, especially, the

helplessness was overwhelming.

Take care,

Geri

[Guest guest]

Hi Geri

I too hope these kids who have to learn to be their own person so early feel

that it is a tough road...Pressure from so called friends can be hard...The

main thing that Ty had to give up was sports...He used to play soccer, he was

the goalie on a traveling team and loved many other sports...Needless to say

these are not things he can do now...Just goofing off with the guts leaves

him looking like hes been beaten up...He has very low playlets so he gets

bruised very easily. Luckily he loves music and is very good at it..He plays

in the marching band, concert band and jazz band. Playing different

instruments in each...And he happens to love school...The last day was monday

and he was rather sad..Last year he was on home bound for 7 months....so he

knows what it feels like not to be able to go...and he'd rather be

there...Luckily he has good friends who know somewhat of what is going on

with him and are very protective....

I hope your grandson continues to do well...Ty goes to all his doctors on the

29th...Hopefully they will be pleased

Take care of yourself

Luanne Ty's mom

[Guest guest]

Luanne,

I notice that more and more young people - young men - are being diagnosed

with different autoimmune liver diseases. I wonder if it's because of

better diagnostics and medical awareness or is it indication of an increase

in this kind of disease?

Two of our sons had difficult medical problems when they were children. One

of them fell from a roof at school when he was 11. He shouldn't have been

there to begin with but he was showing off for friends. He had a skull

fracture, fractured wrist and several broken ribs. At first they thought

that he wouldn't survive. He was playing Little League at the time and he

loved it, but he " lost " an entire summer and the head injury was severe and

may have affected him for life to some degree. Our youngest son had a

different condition that I now suspect was (or is) autoimmune. At the

time, they called it " Upper Thoracic Disk Syndrome " and the spinal disks

were crumbling and regrowing, but they had to keep him in a body cast off

and on for a year to prevent his back from growing and regenerating

crooked. He was 12 when that happened. Earlier, seemingly unrelated,

he'd had to have surgery to remove abnormal growth of cartilege in his

knee. Since he was only 7 years old when that happened, it couldn't have

been from wear like it is when it happens to adults or to athletes.

It can be so difficult for young people when they aren't able to do the

same things their friends can do. It sounds like your son has terrific

attitude and like he isn't letting his medical problems limit his

enthusiasm for life or his interest in things that he wants to do. He

clearly is a very special young man. I hope he's getting excellent medical

care.

Take care,

Geri