AIN/autoimmune network

[Guest guest]

Hey everyone,I was given this site by a dear friend of mine

www.aininc.org

the founder of this non-profit organization is barb yondice.she is

an amazing person.she has many resources,and can help get meds

you may need,doctors,support,you name it.she has helped me advocate

my health care.I have not been online much,have been battling my

neurologist,and trying too get tests done.Barb took the time to

help me make phone calls,and even helped me get in to ucsf

quickly.by offering to have her organization billed until my referal

went threw.

so,tomorrow i go for a spinal tap at ucd,and soon will have the

nmo/igg antibody test,and evoked potential testing.and i am also

scheduled to see the devics specialist at ucsf on the 28th.went

threw hell with my neurologist,nadine yassa.she sent me on a wild

goose hunt. she made the mistake of only asking for a second opinion

and not f/u care,so thats what i got.when i went back to see her

with the ms specialists recomendation's,witch were all these

tests,she said the only place they could be done was ucd,and that

she didnt even know there was a nmo test.so she sent me away with a

paper that instructed ucd what to do,instead of fixing the referal

or even calling the office.ucd told her she could not order the ms

specialist to do them,that she would have to order them herself,and

ucd's lab would do the tests.The head of nurology was even nice enough

to put together the testing requisition forms,all she had to do was

sign them.I seen her monday,took her the forms and she refused to

sign them.she made a scene,even with ucd,was very rude.when i gave

her the ladys nuumber who had been helping me at ucd she said no i

dont work that way,who is she?not a doctor,im not calling her.she

made ucd hunt down the specialist to call her,wile me and my mom

waited an hour for him to call her back.It was a nitemare.oh and she

wrote up a referal to a psych,and told me I could wait til ucsf to

see the specialist for testing,.so it wasrun-around city.luckily ucd

worked with me and not her.she said the specialist said it wasnt

an emergency,and that they ruled out dymyelinating disease,and some

other non-sense.so,I spoke with the lady from ucd,she talked to the

ms specilist,he wanted to know if I had tesing,and she told him

no.He told her to bring me in and do the testing,and they will

help me.

Monday was awful.and I told my nurologist she knows how sick i

am,but she couldnt order any test's but a spinal,becsuse she cant

over-ride the big guy.meaning the ms specialist.yea right!thanks to

the specialist I had an appt. for a spinal 2 days lateR!What a

mess!and this is only my neuro nightmare story for 1 visit.yes.she is

fired.did i ever tell you guys she has 2 offices,side by side,one for

neurology,and child nurology(that one really scares me)and the other

office is a skin care office.man,i should have switched rite away when

i seen that.

Well guys thats what I have been up to.please keep that website

info,we never know when or if we may need help but it is a relief to

know it is there.this is long,i know.lol.so thanks for reading.

big hugzzz,cassy