At long last - I know what this is.

[barb dwyer]

Now I call the Doc on monday - and tell her.

Although - I don't know WHY I'm calling a doctor...
to diagnose nyself.

Anyway -

check this out -
Marfan's Syndrome.

I have a half brother who's 6'7".
My oldest son is 6'5"
My youngest son is 6'4"
(HE'D say 6'4 and a HALF-tht's a big deal to him)
I USED to be 5'11 1'2"
now I'm only 5'10".

I was always the most limber kid in the school.
Athletic,
as long as it was within certain abilities.
Hand-eye... never quite got the hang of that
because I could never move especially fast,
but I was always amazingly STRONG.

You can see my pic -
I've always had a long, asymetrical face
always been very self-conscious about it.

I USED to think I had this
but only on a scale of about 4 of 10.

I'm thinking differently now.

I turned over to answer the phone in bed a couple of weeks ago -
and dislocated my shoulder.
Had to get the Chiropractor to put it back.

Turns out there's a 'thumb test' ...
I finally found out what that was.

I pass.
Big time.

So, I'm going to contact the doc on Monday -
this also probablyu explains why all the meds she gives me for fibro
do nothing
or make me nuts.

Remember, I've suspected all along
that it isn't fibro.

Well, it may be fibro,
but it's ON TOP: of Marfans.

wow.l
Three years later.
I finally know.

Now there can be ACTUAL treatment.

[Impurrfect]

(((Barb))) - I'll have to go research it...I know I learned about it in nursing school, but don't remember much but you sound exactly right.

I remember when we found out what was wrong with my mom. Though there was no treatment for HER condition, just KNOWING was a huge relief, after years and years of different diagnoses, tests, and questions.

Hugs and prayers!

Amy

[barb dwyer]

Yep.

I'm off now to do a bit of reading, as well.

It's the syndrome Abraham Lincoln had.
Although you can have varying degrees of it.

[Impurrfect]

I just read several articles and it looks like the treatment is basically symptomatic...in other words, there are several different parts of your body affected, and each one may be affected to a varying degree...the symptoms are treated according to how bad they are.

The good news is, there is treatment for just about every symptom and there is a lot of info available. There's also a national Marfan's organization and I'm pretty sure you could find a support group there, though I didn't think about looking until just now.

I'm just glad you know what you're dealing with.

Hugs and prayers!

Amy

[barb dwyer]

yup!

I've always had an irregular hearttbeat.
I LOVE going to a new doc
and watching them find it.

Usually -
to their credit -
one eyebrow goes up.

(I have a 'doublebeat' every seventh beat)

SO I ask 'em =
'what? what was that for?"
(jusat messin with 'em)

EVERY
SINGLE
ONE
of them LIES to me.

They go =-
"Oh it's nothing.'
But they listen for another ten beats.
And it WILL do it again.

It's done this all mylife.

now I read that heart problems
is the most major thing with this disorder.

Yet another mystery solved.

[wicked]

Originally Posted by barb dwyer

yup!

I've always had an irregular hearttbeat.
I LOVE going to a new doc
and watching them find it.

Usually -
to their credit -
one eyebrow goes up.

(I have a 'doublebeat' every seventh beat)

SO I ask 'em =
'what? what was that for?"
(jusat messin with 'em)

EVERY
SINGLE
ONE
of them LIES to me.

They go =-
"Oh it's nothing.'
But they listen for another ten beats.
And it WILL do it again.

It's done this all mylife.

now I read that heart problems
is the most major thing with this disorder.

Yet another mystery solved.

Barb,
My oldest son has Marfan's Syndrome, he is 28 years old and 6'6".
He had to have surgery when he was ten days old to repair a twisted (oh, i cant remember the name, a tube between liver and bladder) because he was not urinating enough or properly. He had to have part of his liver removed.
Oddly enough my ex husband blamed me for his illness because of my drinking (I could NOT drink while pregnant! Believe me, I tried! But could not keep it down. Thank God.) My ex husband had Marfans and died from a dissecting aorta at age 43 sitting at the cockpit of an airplane. It was only after the autopsy I found out, (or my sister the RN) that my ex husband obviously had marfans syndrome. His chest was sunken in, had a crowded mouth (teeth dont fit well and he had many removed) long tapering fingers, and eye problems.
My son came to live with me, (I lost him for a long time due to my alcoholism)and when my sister saw him, she said, you have to take him to Ann Arbor where there is a geneticist that can diagnose him. Sure enough, he has it and his father nor the doctors that repaired my son's sternum at age 8, didnt consider Marfan's.
Okay, I am rambling now, my son became addicted to heroin eventually and landed in prison. He got clean and is doing great in college. trying to get him to get treated for the marfan's but he seems reluctant. sigh....
anyway, i am so glad you found an answer! you can get treatment and a lot of support from the national marfan organization. they still send me a newsletter every quarter, and since i am in a major metropolitan area, there are groups of marfan people who meet up to share the latest research and feel that togetherness with their unique and rare condition. good luck to you, you have found your way!

[Impurrfect]

(((Wicked))) - thank you...I miss the "thank you" button

((Barb)) - I just "love" it when doctors say "oh, it's nothing". When they still didn't know what was wrong with mom, she had an awesome dr. and he wrote an order that I could read her chart at any time (I was in nursing school). A kidney specialist came in and said everything was "fine" - mom was at the point she didn't want to hear any more bad news. I followed him into the hall and asked him about all her lab values that were WAY wrong and he said "oh, well her kidneys are failing" I just looked at him and said "ya think?!?!"

Okay, so now I'M rambling. ((Wicked)) is right...the aorta is the biggie I saw from the articles I read, but there are clinical trials on some meds to keep the pressure down in the aorta. You'll probably need a good cardiologist (heart doctor) to keep an eye on all this.

Sorry if I'm being too much of a nurse I care about you and want to make sure you get the help you need!!

Hugs and prayers!

Amy

[barb dwyer]

(teeth dont fit well and he had many removed)

the summer of the 7th grade-
my permanent back teeth were coming in all OVER the place -
my dentist went in and pulled TEN baby teeth
to make room for them.

I started junior high school
with only my front teeth.

My chest is very very WIDE sprung.
And my back is very short.
It's always given me a 'fat' look.

I always said I'm built like a spider.
LONG arms and legs
(fingers and toes)
BUT NO BACK.

This feels ... right.

And to think I find it out ... AFTER all this other crap.

I'm gonna go join that org.

[endzoner]

Hi ALl .. Barb told me bout this Marfans.. and as i exclaimed wow now i can add the 2+2=4 .. I went recently and the Dr and the Pa were talkin back forth this that , most which made lil if no sence at all to me . differant things they said .. when all was over with I was kinda lost , other then they said Fybro was in there . they were tlakin bout my heart and need to keep eye on this that blah blah .. well after lookin up the Marfans i was like holly Hanna i so fit in there other then the hight thing . Im double jointed , missing a disk in my back , i have scolious, flat footed , vision issues . teeth well thats a issue its self .
My brother has the caved in chest .. i cant place my thumb in it
I read that its a gene. If one of the parents carrys it , It can be passed down to the kids and so forth .. it just really makes me do the Ahaaaa thing .. Im curious to return on the 4th and talk to them about all this and get my proper diagnose ,
And like Impur said , there are verious meds , just goes according to the problems .. which makes me wonder one thing OMG how many meds would they put me on ? anyways im still doing reading on this and lookin forward to reading what you all find out and have to share on this .. thanks in advace Endzy
OOh yah the thumb test was the big ahhaaaa thing when i read that , as ive got long fingers but my thumbs are short in compairson to the rest , and ive got really skinny wrists ..

[barb dwyer]

endzoner - thank YOU for the help with the 'thumb test' ...
that was the FINAL thing that made me go ... oh DUUHH.

also - I just got my coworker to help me...

another of thei indicators is
your 'wingspan' (the measurement of your arms outstretched)
is greater than your height.

For those who went to art school -
and were taught to measure the body that way
that people's arms length
is equal to their height -

my wingspan is almost three inches longer than my height.

so there ya go.

AND -

I did ballet and gymnastics
(until I GREW four and a half inches one summer)
anyway -
I always had a very DEEP arch in my feet.

Today -
I'm flat footed.

in fact - when I first started going to the doc about all this pain
that was my complaint
I thoguht it was coming from the fact
that my feet went flat.

[Impurrfect]

(((Endzoner))) - actually, I didn't see medications mentioned that often except for the two they are doing clinical trials on for the heart. The other symptoms (in the articles I read) can often be treated with physical therapy, "proper" exercise (they stressed that a lot). Of course, I was looking to see if they mentioned narcotics, or anything similar but I didn't see it in the stuff I read.

I hope you both get the answers you're looking for and the followup you need - eye doctors, heart doctors, etc. I don't know, but maybe a specialist can take care of all of it? At least when you have the knowledge, you know what to look for.

Hugs and prayers!

Amy

[endzoner]

Im seeing a very good Rhumariod (sp) specialist .. also Painmgmt .. As for excersise .. EEK .. I get plenty of that workin as a house keeper ok , mite not be the right kinda exercise . But I know when Ive done to much I hurt more . Sucks on my side cuz Im so outsink on my body everything sags on one side . back is so outta whack and I cant see my chiropractor to put my hips in place and my back , It hurts way to much anymores , That it causes me more pain then when I went in . So Ive gotta take care of the aches in my joints to get my hips in place , On a good note the meds ( temp ) they put me on no narcotics , are helping me sleep like a log .. tho i wake up in a haze and take a bit for me to feel like im with it . huggles

[barb dwyer]

{{{{{{{{{{{{{{amy}}}}}}}}}}}}}}}}}home girl, this is such a ..... MOMENT for me. A lifetime of stuff is clicking and clanging together.

I remember in third grade - I had to take a swim class, and do excersizes because my back was crooked. My mother (Joan Crawford w/o the money or fame) forced me to do yoga. That was only for one summer.

had all my teeth pulled out.

always 'dislocating ' something or the other... that's a life long thing, too.

no joints in my thumbs.
a birth defect I've always hidden.

being a head taller than everyone in my class.
I'm shocked to see I'm down to 5'9 1/2".
From 5'11".

Long face (you can see that in my pic)
asymetrical face

I'm not gonna TELLL y'all how BIG my feet are

extremely long fingers and toes
enormous hands (81/2 mens glove)
and NONE of them fit the length of my fingers)
(and thumbs)

Irregular heartbeat

holy crap.

[Impurrfect]

yeah, it said that "normal" exercise was usually too "taxing" for people with Marfan's. I didn't go into that section, but I think they were more focused on stretching, maybe, or building up strength?

[barb dwyer]

yep. I always sucked at the running stuff.
and yes - workouts ARE too taxing.
they didn't make me feel better -
they made me feel like crap!

but I'm amazingly strong, even now.

I hate to say it
but it looks like I'm gonna have to pick the yoga back up.
I HATE doing stuff that 'everybody is doing.
Fad' excersize.
I hate that.
But I can get a video
and start there.

I tried to sign up but they want money - LMAO
I'm a double-afflicted-marfans AND poor.

Maybe later.

this is so exciting!

[barb dwyer]

the price is DEFINITELY right at SR!

help shouldn't COST anything.

Soberrecovery definitely is walking their talk by not charging for this service.

More should follow their example.

[Weeza]

Barb,

I am so happy for you that you've at last figured out what the source of your Fibromylagia pain might stem from and from what you've described, there's matches to the Marfans Syndrome that Abraham Lincoln was afflicted by... Have you seen the History Channel's recent program on death masks that featured Abraham Lincoln's mask? It was astounding because President Lincoln had a living mask made that survived to be discovered and compared to his death mask, along with photographs that was fed into a forensic software program and helped show the progression of what this disease did to him over the years.

From what I understand, Marfans for President Lincoln was a painful disability that affected his speech, created tremors in arms so affected penmanship, thus he limited public appearances for the benefit to prevent the public from worrying about a president sick in Office. Apparently his walking gait was also off as his spine had malformed. It truly sounds awful but this was over a hundred years ago and Medicine has greatly advanced.

Perhaps chiropractor visits, swim therapy, and a good rheumatologist may test bone density to provide the right medications. I just can't get over how your family pediatrician missed this for you and your siblings.

I've read up on the Wikipedia for Marfans and there are other symptoms to be concerned about regarding eye vision, breathing, and central nervous system that may cause Fibromyalgia types of discomfort.

Something you've reminded me of about what my family shares in common is sciatica caused by Leg Length Discrepancy where one leg is an half inch to full inch longer than the other, plus the longer leg is a half shoe size larger than the other. My dad had this, I have it and so does my son. It makes for clumsy running, and walking to have a waddled look. You can check for this by looking at the bottom of your shoes' soles. If there is a noticeable wearing away of one sole over the other, then that's a good indication that one leg is longer than the other.

I've seen an orthopedic doctor for foot pain and he brought this leg and foot length discrepancy to my attention, then told me I needn't invest in expensive orthopedic shoes but could purchase Dr Scholl shoe inserts and double pad the shorter leg's shoe so that there would be less stress on the longer leg which then would reduce stress to the dominant hip and lessen sciatic flare ups.

What amazing fortune to have Ann here to help fill you in on Marfans. I'm crossing my fingers that her son and yourself will not have a difficult road ahead and that this potential prognosis for you will at last steer you to the right places for treatment.

Take care,
Weeza

[barb dwyer]

*thanks*

actually I feel like jumpin around -
but hell, I'd wind up in the hospital -
dunno what would come loose!

[Lenina]

((((barb))))

I'm so happy that you're getting the physical stuff figured out! I'm keeping the positive thoughts going for your new place to live.

Much love,

Lenina

[Impurrfect]

((((Barb))) - you crack me up about wanting to jump around but afraid something will come loose

I was posting here, last night, and my internet went out. Found out this morning that, as dad said "one of YOUR cats knocked the internet box off"....oops!

My mom went through 26+ years not knowing what was wrong with her. She may have had symptoms earlier, as it was finally decided that she had rheumatic fever when she was a child (this was figured out when she finally got a good doctor who put all her symptoms together, mom talked to her mom and brothers/sisters and they remember her being "really, really sick when she was about 10). She died, about 2 years later of "rheumatic heart disease).

Years and years of test, heart caths, a trip to the Mayo Clinic in MN (where she's from)...no one could figure it out.

It just tickles my heart that YOU figured this out and that it's something that can be managed. No, not cured, but managed, and that all the pieces of your problems, over the years, FIT!!!

How much do they want for you to join? Never mind, I'll check it out.

Hugs and prayers!

Amy

[barb dwyer]

Y'all -

Amy's Christmas present to me is ... she's going to pay the fee for me to join the organization!!!!So I can get the newsletter, and get in on these national drug trials !!!hoorah!

*prayers of Gratitude for Amy*
I'm here at work (of course, not working again - LOL)

well that's not true - I stop and wait on people when they come in,
and I do my muindane store tasks...
dusting, facing bottles, etc.

ANYWAY -

I'm also composing the letter to my doc that I will drop off tomorrow.

Being non-accusatory, of course,
just listing my symptom stuff
(measurements and stuff)
and giving her the website, and a couple of others.

THen SHE can call ME for an appointment.

And it may wellbe that there's fibro on TOP of this
I"m no doc & don't even play one on tv ...
so I'm staying open to what she's got to say.