Greetings and intro :-)

[Guest guest]

Grettings to you all . I've just joined Ceda at an invitation from

Gail --and in reading posts this morning saw one from another

old friend ( HUGS gal ) already too .

I'd like to introduce myself by starting saying I'm so glad to have

the opertunity to learn from you all -- I'm recently diagnosed with

EDS by the physicians at the NY chiari instutue , and have been

eagerly putting together LOTS of health history problems in the

context of EDS - it ALL makes such better sense now !

I'm in Paradise CA - a small town in the northern high

sierra foothills with the lovely name of Paradise - LOL ) - the town

was org. founded during the CA gold rush era , and called " Pair

of dice " - legand says when " respectable " women first arrived -

their first self appointed task was to start a church / then they

promptly forced those rough and tumble minners to accept a

name change too !

This intro post is REALLY long -- I had a hard time trying to sort

out what to tell you all - and what to leave out - LOL . I'm 52 now

-and have one daughter - now 26 and a care provider

for me that greatly eases the burdens of living alone :-)

I've had three spinal bifida repairs , abdominal hernia repair , 4

pregnancys with severe bleeding issues - uterine rupture during

one full term delievery - chiari decompresion - have confirmed

multiple sclerosis , blew out an ankle with ligagments and

tendons torn YEARS ago /casting for nine months finally allowed

it to " heal " with major instability known , one knee that dislocates

/pop's out when I try to sqat down -- severe " Raynauds " impacts

in my feet and hands /gosh endless " stuff " that fits- LOL _ --and

now am facing three probable surgerys in the next year or so --

so that EDS diagnosis and learning more is really a priority for

me currently .

I wasn't told which type of EDS I have by TCI physicians -- it's my

understanding that they currently arn't SURE which type is newly

found this last year to be associated with chiari --and they are

using our own health history to evaluate those possible features

/problems individually that would lean toward type 4 in my case

/per health history - since many of us DO show those sorts of

problems -- but in my case it's seeming OVERALL milder type 4

than some develope too .

I did just see a rheumatology for the first time this last week -and

he took the diagnsosis very seriously - confirming for himself I

do have arthritis young ( I'm 52 but have carried that diagnosis

since my early thirty's too) -- confirmed the joint hypermobility

--and immediatly said he feels he needs to locate a physician

specialist in EDS to refer me too now too . I REALLY liked this

doctor - he's young - a new grad - with that modern attitude of

partnering in care that I want as a retired nurse .

He reviewed my current medications ( sustained release

morphine and neurontin at high doses ) --and my current plan

with my local neurologist and TCI neurosurgeon to start back in

warm water PT now with the hope of regaining better muscle

strenght -and loosing some extra weight that has crept on during

the last two years while my overall health fell apart again .

We're cautiously optimistic I may be able to avoid one or even

two probable surgerys awhile at least IF I can mannage the PT

sessions /increased exercise ect in a way that doesn't cause

bigger EDS issues to sideline me again !

As a retired neuropsych nurse --the physicians associated with

the Amercian Syringomyelia Alliance Project ( ASAP ) - a

nonprofit org . for those with either chiari or chiari and sm - or

just sm -- kindly helped educate me at great lenght about chiari

over the last six years since my chiari decompresion surgery

was done -- and I've done my best to be a good peer advocate

partner in helping others learn and find good care .

I hope that this experience / learning they've helped me achieve

on acm and related conditions will prove of some help to those

of you who have EDS and chiari as well -- but I'm here for ME - I

NEED your help in learning about EDS and how best to

mannage the impacts in my life too !

I've also had the wonderful experience of serving on an

Independant Living Services agency board of directors for about

twenty years now that serves the northern third of CA - so I have

learned a LOT about navigating through the needs of the

disablity community and how to obtain needed services ect . - if I

can try to help anyone with this sort of need - please don't

hesitate to write dirrectly " offlist " or here .

My current state of health is overall much better than that combo

of diagnosis catagory's of disease and conditions might LEAD

someone to think -- I walk fairly well -but use an electric chair

when away from home due to frequent falls -and INJURY " s that

happened easily with falls - NOW that EDS diagnosis makes

those much easier to understand - tehehe !

I have milder mulitple sclerosis -- but more major bifida /chiari

impacts -- yet with great neurosurgical care I've done pretty darn

well over the years too . -- My biggest current task is to get to

better EDS care /understanding - to that end I'd welcome

sugestions who in CA ( or the whole west coast if need be ) you

all may recomend I go to consult with ??

The rheumatology seems very open to any sugestions - he's

currently researching to try and locate someone . He is the sort

who welcomed my acm /sm knowledge ( and ms too for that

matter ) and seems to be a GREAT local partner in the making .

He gave me a 5 pound lifting limmit -- no squating down

/bending over - in general valsalva type actions ect - and is going

to help fine tune possible medications changes AFTER doing

some research . He did feel I should consider increasing the

morphine I take in the hopes it would allow better movement ect

( I'm currently on 30 mg sustained release twice a day /with the

option to take a third pill on bad days - something I rarly do out of

stuborness - it does help . )

He brought up the current use of high vit c for EDS -- but feels it's

best not to start that until the type of EDS is better pined down

because of the potential for kidney stones using it at high doses

too .

He expressed concern that I'm frequently showing mild levels of

differnce in blood presures when taken on both arms at the

same time - my right is often elevated into the " above safe

ranges mildly " at 130/100 or so --while the left arm is more like

100 /70 -- he said he thinks I may also need further heart studies

/workup -- but plans to do more reading on EDS and this

possible tie now .

I did have a holter monitor for three days last year that was read

as normal ---and INTERMITTANTLY have had both high normal

BP readings AND low readings - the TCI physicians feel this is

autonomic instablity due to acm impacts / and can't be treated

effectivly --any thoughts ? The only heart accessment's I've had

were either preop ekg's ( normal ) or the one holter accessment

--but I do also have a history of intermiitant droped beats -

skiping every fourth beat for example - other odd irregulartiy's .

We are also going to experment with taking the neurontin level

up to between 6-8 grams now - using diamox /lasix to mannage

the fluid retention already causing edema UP to the knee's level

the rhem. could feel -- the TCI physicians feel its a dirrect result

of current neurontin levels of 3200 mg /day --but they feel this

unusual high level that were going to experment with may help

the central pain /neuropathic pain more too .

So I'm open to your thoughts --eagar to learn from all of you ! And

thankful to Gail that she pointed me here .

I know that's a long intro -- I'm NOT good at either editing or

spelling - LOL - so I'm thankful to those of you who made it

through -- and really looking forward to getting to know you all too

..

One last bit too -- for any of you diagnosised with acm - please

do visit a small nonprofit I helped start at our web pages too . It's

named Wishes and Rainbows - and it's here to help with

expenses getting to specialists /or other hard finacial impacts in

our lives -- and DUE to the suport of the acm /sm community is

doing fairly well in helping others .

It's at http://www.wishesandrainbows.com - we'd like to help if

someone has need . The rainbow reserves closet has lots of

goodies you can request too - and there are links to free /low

cost medicine sources ect there = in short we've tried to put

together resources someone may need as well .

" in Paradise "