question--chiari-lupus-sculodurma-pain

[Guest guest]

Hi,

I am confused, (feel like complaing today where no one around can hear) i have

many many reports. Some say low lying tonsils, no signifigant finding regarding

it. Some say, degenetritive disc, mild scolisosis, incidential hemongioma, cysts

on most internal organs, they just found a moderate pericardial effusion, my

echos show plumonary hypertension at 45-50hmg.

They are doing echos once a month to watch to see if the effusion will grow.

A rheumatoligist i first saw in 2002 said i have pos. ana-anti-dsna, false pos.

and it is fibromylasia.

 

The next rummy says i dont have any reumatoligic conditions, but i have primiary

plumonary  hypertension.

Now i see another rehumatoligist, who says i dont show an inflamatory process,

but the effusion is closely associated to lupus, and i do have symptoms in past

and present. I had a pos ana with a cell pattern showing sculodurma, so a UC

davis dr told me I have that, but listed on report collegan vascular disease.

 

He was a very uncalled for rude dr and i wont go into details, but have body

pain that is worsed in the last few years. My arms hurt, my elbows, my hands, of

which have bone looking like they are a rumatoid type, but dr says

ostioarthritis. My heart dr wrote i have rumatoid arthritis. I went in and told

them my dr says no.

He put those words in my report, my dr told me i dont have it but left it in my

report. I do not know where he got the information to even write it.

 

The new rehumatoligist is doing a new ana and if it is high he say to take

plaqunel. He said the percardial effusion will make it high.

Since i have so many diagnosis i do not want to take anything. My cardialogist

is wanting to do another Right Heart cath.  I dont want to do it because i have

wolf parkingson white (but had a cardiac ablation in 2007 for it) after the

procedure i had visual auroras for a yr, and even now but less. The cath may

cause it again.

 

I do take demeral for body pain and valium for anxioety. Any of these conditons

can cause anxioety it itself, let alone the stress of everything.

 

I sorta think my issues may just be comming from low lying tonsils or EDS stuff.

The drs dont say anything when i mention this, because i dont think they know

about it.

 

I do ok, just the pain is very hard to feel like doing things and you know how

it is, you just sorta go on anyway and try no to show it and complain. (even

with my family and children who also have chiair and after the loss of my oldest

in 2000, from complication from it, they don't understand.

I know demeral isnt good to take but i use it when i get tired of pain. I

sometimes take myself away from it and the valium but i get very sick when i

stop the valium, with horible nausa.

 

Thanks listening,

Joyce

ca