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Gollie asked me to adjust this post a little so that everyone could read was a little too scrunched together here is the edited version ok?

Ok here’s the scoop so far. I got all the way to the MS diagnosis on Tuesday 1/19 , Neuro says let me know what injection you want then call and leave message at office and I will call it in for you.  Ok, so I call them and let them know on Thursday the 21st.

Now they call me on Friday the 22nd and tell me that they called it in to the pharmacy. (meantime I’m cooking dinner)  then ten minutes later the pharmacy calls and says its ready. So i go pick it up and stick it in the fridge.

Meantime its late Friday and the weekend is rollin’ in so I figure I will be hearing from the Copaxone company come Monday . Well I didn’t hear a word, so I called the Copaxone Co. Monday evening the 25th, to see about getting the auto injector and visiting nurse for my first injection instructions. They said, oh my neuro has to write a script for that and that can be done through fax.

They took my doctors name and what office I see him at and said,” we will take care of it no problem”. (my neuro works out of 2 different offices).

Meantime my neuros office calls and says to come on in and pick up your Copaxone welcome kit on Tuesday, I will be there at 12:30 pm.. So I’m thinking ok cool maybe the Copaxone company did their fax thing and I can get a copy of the doc report which I signed a release form for at my last appt.(that never got sent to me)and get started on my injections soon.

So I get there at 12:30pm  and the secretary IS NOT THERE! The other receptionist (for the other doc on other side of office is there) and gives me the kit.  I get home and it’s the usual info. So now I’m sitting here with my Copaxone in my fridge and a welcome kit.

I called the Copaxone co. again on Wednesday and they said they sent the request to my doc office,  the one I go to.  So Wednesday, later in the day the secretary calls me again and says,” did you get your welcome kit?”, and I say yes and by the way I said to her, “did you get the fax and request from the copaxone co? “ she says “ well no I didn’t get anything like that, don’t know what you’re talking about, but yes I think a nurse is supposed to come for your first injection”.

I explain what they told me and she says to me,” well they take care of that kind of stuff in the other office even though you come to this one, you should call them about it”. (In the meantime I know the Copaxone co did contact her as they told me so before I talked to her!)

So I proceed to ask her why she hadn’t mailed me the neuro report yet and she said, “ oh we sent those to your pcp,  he will have the notes from the neuro,” I said, “ yeah, but you had me sign a release form so you could send me a copy.( I’m like, whatever,at that point). I had told her I wanted it because before I left my appointment with the neuro last time he wanted me to have a follow up with my pcp about all this.   I also have a follow up with him on 3/11.

So, I had a feeling that I should get a report and bring it with me to my pcp. Well, I got to my pcp visit today, Friday the 29th, and guess what?  He did not have anything from the neuro!!! OOOOHHHHH I WAS SO AGITATED, but not surprised.

So,  now I had to sit through an appt with my pcp explaining everything without any info from neuro office,  and still haven’t gotten Copaxone  thing taken care of!
I knew the office workers were bad already because after I had my evp studies done  I had all but the somoasensory results sent to me, before my next neuro appt.  I called the neuro office three times to see if they had it and they kept saying it did’nt come in yet and they never bothered to follow up on it.

So,   I finally got a hold of the place I had it at to fax me the results.  When I got to my last neuro appt, he said hum, I am missing two of your test results,( I thought to myself NO **IT)!! Well I pulled out the copies I made him, cause I just had a feeling. You should have seen the look on his face, I didn’t bother to tell him about the office ladies, I just wanted to discuss my results and diagnosis.

So I tell my pcp all this and he was not happy,  mean time I had some more blood work done, and my pcp had copies of them in my file.  He says,” your blood work looks good,  just your sugar is a little high but nothing to worry about.  so I get the copy of it home and start to compare it to my last set. I am wondering what the heck,  so the sugar is a bit high but some other things were wrong so I’m trying to concentrate really hard and happen to look at the top on page and see that it is some other patients blood work...
Please Someone Pinch me and wake me up from this nightmare        Gollie

Ps   I don’t dare change my neuro just yet while I’m right in the middle of the Copaxone thing and on next visit he is going to order the 2nd set of mri’s w/wo contrast.

I do have another name for a good neuro in my area who deals with several ms patients and goes to all the ms meetings etc.,  but I know how long it takes to get another appointment.  So I will just have to plug my way through till my next appt (it’s not the neuro it’s the office help).  If nothing changes after my third visit with that office,  my pcp said he would send me to the other one.
This is my first post since last Sunday but the first chance I have had to post , I’m so behind in everything, from all this medical stuff.    Sorry for all the ranting I just have to get it out,  lol.

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by Rena705

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45 years old
Edmonton - AB
Mood: Rena705 is sad that we have to deal with Neurologists...I've met Veterinarians with much more personality and compassion! Lucky Dogs!

, Feb 29, 2008 08:01PM
To: gollie

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Mood: gollie is taking a mind break! In the garden for the weekend.

This is an absolute farce!  

I don't think you need to deal with changing Neuro's right need to make you Neuro aware of all of the screwups his office is making!!!

Once you mentioned that you had someone else's blood test results, I WENT THROUGH THE ROOF!! (my hubby is going to be sooo angry)  Did your neuro or your pcp order the blood tests and who did you get them from?  

This is incompetence, plain and simple and for a neurologist to not have seen this is a clear indication as to what sort of physician he is!  

I sincerely doubt that you are going to see any magical changes in this offices' instability and I really hope that your pcp will see it for what it is and get you in with someone new!

I can feel your frustration Gollie and I wish there was something I could do to help you but I am here to listen and you can rant all you want honey!  Please let us know what happens next in your saga ok?  

So did the pcp make any suggestion as to how you can get the Copaxone thing on the go?  Geez...the stress you are dealing with here is not a good thing should be on this soon I would think and it seems to me that the pcp would contact the neuro to ensure that this was looked after???

I don't know honey...let us know what the next move is anyway ok?  We are behind you and looking out for your back ok?

Lots of Hugs,

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by mokibear

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43 years old
Ontario, Canada
Mood: mokibear is trying to take it one day at a time

, Feb 29, 2008 08:31PM
To: gollie

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Mood: gollie is taking a mind break! In the garden for the weekend.

I'm pretty tired right now, so this will be short, but I just could not let this go. I agree fully with Rena that this is a farce and totally unacceptable!!!! I can't believe that you are having to go through this. It is appalling that any of this has occurred for you and I do think you should let your neuro know what is going on in his office.

I understand you not wanting to change neuros right now but this kind of stuff can not go on. You have meds in your fridge and can't even use them. That is so wrong!! You have someone else's blood work. That is so wrong!! Plus all the other stuff.

I'm undiagnosed right now and may not be the best one to give advice as I just floundered with my own appointment but as my DH pointed out, I also can't tick her off too much as I have no where else to go. You said that you have another one that your pcp is willing to send you to, maybe it is worth looking into. You should not have to be going through this.

I hope things get on track for you soon. You really do need to be taking your Copaxone and I pray that will all happen soon for you.

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Journal Entry:   "This is our first grandchild born January..." [Read]

, Feb 29, 2008 09:05PM
What a mess!  I agree, you do need to let the neuro know what is going on. Many times the doctors have no idea what their office staff is doing unless someone brings it to their attention.  

You've just received a major life changing diagnosis and you should not have to go through this!  I am so sorry.  :(

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by gollie

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Mood: gollie is taking a mind break! In the garden for the weekend.

, Mar 01, 2008 06:35AM
To: rena mokie and latw
Hi all: so good to hear your comments and support!  Thank You for the replies.

At a very good suggestion of another member; I revised this thread on a new post.

There is abit more info on the new post, so only reply to that one.    

                                                   All My Best  Gollie                  
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by ELT

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Mood: ELT is on a hunt for nerve pain info, since docs have been treating me for nerve pain for a while without explaining it to me, grrrrr

, Mar 01, 2008 08:14AM
To: gollie

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Mood: gollie is taking a mind break! In the garden for the weekend.

Well, all I can say, is, Good Golly!!!  How does this stuff happen????  I've had some similar issues, but, nothing on the scale of your day.  LOL  

Hoping it all gets sorted soon, and that it doesn't keep occurring.

I'm having the opposite problem--I can't get my Copaxone.  My doctor keeps faxing and faxing the prescription that Medco says they need and for some reason the knuckleheads can't enter the prescription into the computer system.  It's been preauthorized--that is showing, but they keep saying they haven't gotten my doctor's prescription.

Shared Solutions has been a great help.  When I last talked with them a couple of days ago, they told me that they would fax the doctor's order (which they had on file) to Medco--and they did this while I was still on the phone.  Will see, but it sounds like I've made progress.

Shared Solutions also helped me with getting the forms needed to put me in their system and get the visiting nurse.  I gave them my doctor's number and they contacted them.  Maybe they'll do the same for you.

Best wishes.  I know this is frustrating!


Wow. That getting another patient's blood results is the capper. Incredible. I'd file complaints all around, but that's just me. They have safeguards that are supposed to be in place to ensure that what's happening to you doesn't happen. If people don't complain, this stuff doesn't get fixed. I wouldn't want someone else getting *my* medical records by accident. Not that I've got something awful hidden in there, but...that's what medical privacy laws are about. And just imagine--what if someone decided based on those blood results to move forward with some unnecessary tests or treatments? Good Lord.
Hi All!!  Thank your for your comments and support here.
Just adding alittle more info to calarify a couple things better.

Rena in answer to your question :My Nero ordered the blood work last time i was there for the dx. just some last minute tests. I got them done and my potassium was high. I only knew that because i made sure to get get my results. (not because the nero office called me).

I brought them with me to my gyn appt. monday, and she had me go redo the potassium test,  i got the results and it was fine.

Then on my follow up appt. on friday with my PCP yesterday, I brought all the results with me. As he did not order the blood work, so he would not have had a copy.  (or so i thought) so I tell him all that has happend with nero office, and he looks in my file and says i see you had some blood work done. your test are all fine but your glucose is
just abit high nothing to worrie about.

Now im really confused  glucose!!!! hummmm am i diabetic and not ms lol????? (but i dont say this to him im just thinking in my head) so i say ok can i have a copy
of that from my file, so i can keep track of all this blood testing, because i just want to be sure i dont get duplicates and have my ins. co. charge for me them.  He say's sure ill make a copy for you.

I then run home and im comparing the blood work i had to the copy he gave me.  i was knocking my brains out!! wondering  why my glucose was showing alittle high on his copy and not on mine.  I looked at the top of page to see if this was an old one i had a couple months back, and what do you suppose I saw???

Im flabbergasted too..    I kind of feel sorry for my pcp, he was so understanding and supportive and concerend about my situation, and ticked off at the , neros office help,  said they need to be fired lol.  He is getting ahold of them for a full copy of my nero file.
and told me he would be more than happy to refere me to the other nero if i like. I did tell him I will wait  till next appt with nero and go from there.

It was so ironic that my pcp messed up with me and someone elses bloodwork, while he was steamming about the neros office help.   Oh My Gosh.    

Deb61  Im sorry to hear your having a problem there too.
I had no problem getting the perscription at the pharmacy,  I have spoken to
the copaxone co twice now, to get my nurse visit and auto injector, its been since
wednesday, I fear they are having no better luck with my neros office help, as far as getting the script for the injector and nurse. They took all my infor as well.
and by the way,   Its nice to meet you!!   let me know how you make out
drop me a message!

Biowham Hi There
Yea I do agree with you about the complaint thing. it was friday and i was
overwhelmed from the mess all week. I just couldnt deal with one more thing that day.
I decided to  forget it all Just for the weekend.
I wanted to post on this issue, and get some ideas from all of you, because
tomorrow is monday, and I need to do somthing, Without blowing my lid.

I am in the middle of the copaxone thing, and the nero is going to order the New
mris  it has been 6 months since the first one. my appt is on 3/11 so close, if I drop him right now, I will still have copaxone in the fridg I cant start, an ms dx of 2 weeks,
and a Pcp that dosnt know alot about ms.
I would just like to get to the next appt with the nero get the orders for mri and copaxone
taken cared of and then switch. At least I will have first and second set of mris to bring to the new nero.  Because we all know  it could be up to 2 months to get in to the other nero.    I feel so stuck,
                      Again thanks to all for your continued support!!    All my Best Gollie
                                                      All My Best Gollie
Hi All :

Hi All :

I want to give you all an update on how I handled the Neuro office this morning.
Thanks to all you comments and post over the weekend, it helped me to sort
out How I was going to handle the terrible way I was being treated by the
office staff.

I was ready to blow my lid by this morning, but managed to keep my cool to
some degree. I made the call to my Neuro's main office. (not the office I am
seen at).

I started my conversation with the lady that answered the phone there and
asked for her name. I told her who I am, and she said oh your name is familiar.
I interrupted her and said:  Listen  I am very upset about some things that have
been going on with the office help between your two offices. First off I told her
I was dx's with ms 2 weeks ago, by the Neuro and second, he has offered to
do my continued care. I like the doctor and would like to continue with him!

So I thought to call and talk to you first before I blow up and tell the doctor
himself that I cannot continue treatment with him, due to the lack of care
i am receiving from the office staff. And then call my Insurance co. and give
them a run down too.  ( At this point in time she said oh yea
that's why I remember your name, I'm so sorry about your dx, and I sent your
enrollment form to shared solutions last week so you could get the nurse
and auto injector.)   I happened to know shared solutions did not get it till
end of day Friday.

I guess she assumed that that was my only problem with them, and I said to her
now I would like to give you a blow by blow run down on what I have been going
threw with the office help, so you may understand where I am coming from, and
How serious this is. ( I also included the names of the office workers that blew
me off)

(I just didn't care at this point what they did or said or if i ever went back there
I was going to have my say and let them know that my complaint was not
going to stop with this phone call) If things could not be resolved here and

I told her about everything that you guys already know about from my posts, and
lol, I took my time about it too. Because I was determined to get my point across
that I am not going to put up with it any longer.

After I told her all the major stuff,  I said, you know? I had a dx of ms 2 weeks ago,
I'm still sitting here with injections in the fridge that I cant use till the nurse comes.
I have been a nervous wreck just trying to keep my head together, running around
getting all my test results and making my own files because your office help acts
as if I don't exist. And I got the run around asking for my reports from the Neuro,

So from here on out if I am going to continue treatment with the Neuro here I don't
want any static when I ask for copies of my Neuro notes, any further test etc... It
has already been proven to me that I should do this, and I will continue to do it
from now on. Regardless of weather the office help improves. I told her, It is my
right to receive anything from my file as long as I sign a release form for a copy.

Well she apologized up and down and all around, she pulled my file and got copies
ready to send to me and by the way I told her about my PCP being upset
because he was not sent anything either,  lol So she is aware that i discussed this
with my PCP.   so she said oh jeez  i will get copies to him right now.

So  I will go to my next appt there, and see if any thing changes, if not I I WILL
TO THE RIGHT PLACES.   And go to the other Neuro.

Oh and the copaxone nurse called me today, and as soon as my autoinject
gets here threw fed x  i am to giver her a call asap, she only lives 15 mins from me so
she said she can come in the evening, hoping to start at end of week
could take up to 5 days delivery from fed x, possibley sooner.

Thank You all for helping me sort this out and giving me the courage to stand up to this.  

                                                       All My Best Gollie

I am so glad that you stood up to that woman and made the necessary threats and to be honest with you, if I were that woman I would be VERY AFRAID!

I know that is not what you were trying to do and that you were just trying to get the care that you deserve and need and I do believe that now you are going to get it.

I believe that you have the power now to follow through with any of the things you said you would do should your care not improve to the standard it should be!

You are being pro-active and this is a good example to others that sometimes you have to be pro-active because no one is going to do it for you and you have to have that care and this is the only way to get it sometimes!!!

You Go Girl!!!  Keep us updated as to the next episode in the continuing saga of GOLLIE NEEDS HER MEDS...SO GET ON IT ALREADY!!!

Lots of Hugs and a Big Pat on the Back!

I, too, am soooo proud of you painting the picture for the office person of the WHOLE PICTURE.  Good job!  And you got what you needed.  Tha's what is most important.

Now, I would follow this up with a letter to your neuro and the office manager stating that you are following up in writing about the whole horrid mess.  Prodeed to ennumerate the many ways in which they dropped the ball and misled you and almost caused you to need to change doctors.  You might even mention how frustrated your PCP is.  (Specialists live by referrals).  So that the whole thing is now in writing and documented as soon as possible after the incident.  It can be a firm, letter just documented the c**p that happened without showing your real anger.  Just be matter of fact.

The neuro needs to have documentation of how his office is blowing people off.

Good job!

HI there!

Thank you both for your comments and support.

Im so glad I did that!.  I had worked myself up to such an
agitated state over the weekend, that I wasnt sure I was going to be able
to keep my cool on phone with them monday morning.  I was so stressed
That I started to worrie that I might get a relaps of MS.   That is another reason
I always try not to get stressed overthings.  I feel so much better now.

Quix:  you are 100% right on the nose, about documenting this with the
office manager, I had been thinking about that last night!  I am going to type
it all up. and send it to them.  If they dont like it, oh well.   As we all know
that, my talk with the lady on the phone may not get any further than her.
I will be nice but firm when I write this, and start the letter by saying:

I like my doc and would like to continue treatment with him, BUT


Rena: Thank You for you help in all this!!!      Now you All keep in touch here ok?

                               All My Best Gollie
I just thought I had trouble getting my labs and other results back!  I will pull a gollie and get it done!!!!!!!!!!!!!!!!!!!!!!  You go girl!  I just hope to be as tough as you.

Hi Nette:

Here is somthing you may try, this is what I have been doing for
awhile now.
When I go for and test- be it  labs,  mris, ct, evps ect..
I always tell them I want to sign a release  so that I may pick up
my copies of the results or have them mailed to me. Then I proceed
to ask how long it normally takes for the results to come back on
a particular test.

Then I will follow threw with a phone call to see if the results came in
on the expexcted day. if not then a couple days later I go there or call
back to check again lol

They know me by name now lol

If you still have problems, Its time to call a manager at the facility,
be plesent but very firm.                         All My Best Gollie
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