NIH Update

[Guest guest]

Hi Everyone,

NIH called yesterday, I has biopsies on Jan 8th for EDS. Still not

back yet! They were supposed to be back the first week in March, but

not! They said my cells were growing too slowly to do anything with

them yet. Anyone know what this means? Also they said they would

start with collagen sequencing? I'm a Nurse and I don't know what

this means, she tried to explain it, said there was 30 different

types of collagen but they knew what they were looking for. Anyone

know what this one means, collagen sequencing? She said maybe by mid-

April the results might be back. Said they were also looking at the

DNA.

Other boring news, I got my new tooth today, a crown made of gold!

Oh I feel so rich! That's the tooth that broke in Jan. I wanted to

have it pulled, but he said no. So used part of the tax return to

pay for it.

My left Deltoid that has kept me in agony since before my shoulder

surgery in Jan.,still is awful. I saw the Ortho PA last week, then

she discussed it with the Dr and came back and told me Dr. Aram says

it is fine. I asked " how can he tell from the other room, he hasn't

even seen it yet " Ticked me off! Anyway he came in and saw me and

moved my arm around in 3 directions and pronounced it fine. I told

him it is not, look at the bulge.Asked for a sonogram, he refused. I

said I haven't been wrong yet after 9-10 surgeries and I didn't buy

it. He blew me off, renewed my Oxycontin(THANK YOU ALL FOR YOUR

RESPONSES ABOUT MY OXYCONTIN CONCERNS AND QUESTIONS) It does

help!!!!! Then my husband Larry saw Dr. Aram today, we have the same

Ortho Dr. to get his osteoarthritic knees injected with Halagen. The

Dr. asked how I was doing and he told him I had a little trouble

with my left shoulder but was OK. Gosh! Ya just want to shoot the

guy, my husband. It's like everything I tell him goes in one ear and

out the other ear. The pain the suffering and he goes and blows it!

I'm so pissed at him. Just keep his mouth shut if he can't get it

right. ARRRRRRRRRRGGGGGGHHHHHHHH!!!!!! They wrote an order for a

brace for my right knee, I already have one for the left knee,

because it now keeps buckling and making me nearly fall down. The PA

wrote it out and today was her last day so I'm probably going to

need a new script just to make sure insurance pays for it.

Now our youngest kitty, 3 years old has Lymphoma, started her on

Chemo today. My precious Scooter died only 2 months ago. My cats are

my kids! But boy at least I don't have all the issues as and

her children. I'm so sorry it just never ends for ya!

Well I've written too much.Thanks!

Sincerely, S.

[Guest guest]

Hi Betty --

I know how rough this time can be. Know that you and your family are in my

thoughts and prayers. We are all here for you.

Love, Patti

RE: NIH Update

>

>

> > ,

> >

> > The following is from my husband, who used to do medical research. I

hope

> > it helps! Love Lana

> >

> > The " growing cells " are fibroblasts being grown in tissue culture media,

> and

> > some cells just grow slower than others for unknown reasons. They are

> > looking for genetics defects in the cell cultures, I suspect.

> > As far as the collagen sequencing, they are doing the DNA sequencing of

> the

> > collagen to determine the type of collagen as compared to the known

> > sequencing of known types of collagen. This will tell them the specific

> > type. That's about the height of my knowledge. :-)

> >

> >

> >

> >