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Awful Nero office workers! Help Please!!
Hi All:
In desperate need of some good guideline advice on this matter.
I will try to do this without a ton of detail, otherwise is would be way to long of a post.
I was Dx's with MS this past February. I was under treatment with a Nero. Not an MS
Specialist. Used copaxone for a bit but had to stop due to reactions. On provigil, ect.
During my time with this specialist from January to about 2 weeks ago, I had had nothing
but huge problems with the office staff over there.
They could never get anything right, and thats if they even tryed to do what they were
supposed to do. I was hampering my treatment and care excessively. Example:
After I stopped copaxone, I had to wait 4 weeks, to start another type of DMD, due
to letting the injection site heal. So the Nero gave the staff the orders for betaseron
and long story short 3 weeks later I still did not have it. I even tryed to be pro active,
which I always am, I called over and over ect... at the three week mark I was beside myself.
And gave up. Just felt there was no use calling the doc as the only way to reach him
is threw the office staff. I knew it was a loosing battle.
I found an MS specialist covered under my insurance network. I called them and they
said if I wanted to change to him for continued care that I would have to sing a release
form at the old Nero's office and have them send my records. So I did do that on July ND.
Three weeks later, the new office still did not have my file. So I went threw **** to get that
straightened out. Finally when I'm thinking COOL!!! I DON'T HAVE TO DEAL WITH THEM
ANY MORE. It was so stressful anytime I needed anything, I would alway end up having
to do their jobs for them, I am the one that is sick and they are the ones getting paid
for me doing their jobs. (altho I have actually kept copies of every test and also the
actual Nero reports ect... during the period of Dx ing and continued care.)
Now I get the strangest phone call from the new Nero's office. Get This!!! She says
well the doc said he is not so sure this is MS but will see you for a consultation!
WHAT?????? I said what?? And she said well there isn't alot in your file. I said
Did he see my MRI and MRI report is that in the file? She says well no. I said, is
the testing results in there for my evoked potential studies? she say well yes those
are in there.
Then I said did they send the reports form my optho and urologist? she says no.
OMG!!! My head is spinning at this point.
She tells me in this case the doc will see me in October, I cant believe this.
So I start to explain abit about how I am not well , and that I was on the copaxone
and the meds ect. And that right now I am without the DMD treatment. ect.
She sounded dum founded. I was so flustered, that I took the appointment and got
off the phone. Now I have been fuming since yesterday. The call was so strange
I am as of now putting it together that maybe they left out alot of my other Nero report
showing that he Dx'x me. ect..... and that is why they pushed my appt. out so far.
Well I got the actual Nero reports from the appointments where he dx's me and put
me on copaxone ect.
This lady seemed abit taken back when I told her that I had been on the copaxone and
had been dx's. I'm thinking that they didn't sent that to the new Nero??????
So now what do I do??? I need some good advice, because I'm fuming right now and
I don't want to be calling and sounding like a screaming memeee, all over the place.
Because I don't know exactly what else was not in my records.
Oh and I also informed the lady at the new office that I have all my own copies of everything.
also CD of MRI ect...... right down to all the blood work. And she say well Just bring
it with you when you come, and the Doc can decide from there, on your continued care.
Further more!!!! how could the MS specialist tell this lady to call me and say that he
is not so sure this is ms???? If he hasn't even seen my MRI and all the other info form
the old Nero.
I cannot believe this is happening. ( I have several other issues going on with the ruemy
for fibro and arthritis issues on top of all this alot of pain).
I feel to dragged out and ill right now to be trying to advocate for myself which I normally
could handle.
Please I would love to hear from anyone or all on some good advice, I feel like the old
Nero's office help had given me a black mark at the new Nero's office.
WarKitten 2008
In desperate need of some good guideline advice on this matter.
I will try to do this without a ton of detail, otherwise is would be way to long of a post.
I was Dx's with MS this past February. I was under treatment with a Nero. Not an MS
Specialist. Used copaxone for a bit but had to stop due to reactions. On provigil, ect.
During my time with this specialist from January to about 2 weeks ago, I had had nothing
but huge problems with the office staff over there.
They could never get anything right, and thats if they even tryed to do what they were
supposed to do. I was hampering my treatment and care excessively. Example:
After I stopped copaxone, I had to wait 4 weeks, to start another type of DMD, due
to letting the injection site heal. So the Nero gave the staff the orders for betaseron
and long story short 3 weeks later I still did not have it. I even tryed to be pro active,
which I always am, I called over and over ect... at the three week mark I was beside myself.
And gave up. Just felt there was no use calling the doc as the only way to reach him
is threw the office staff. I knew it was a loosing battle.
I found an MS specialist covered under my insurance network. I called them and they
said if I wanted to change to him for continued care that I would have to sing a release
form at the old Nero's office and have them send my records. So I did do that on July ND.
Three weeks later, the new office still did not have my file. So I went threw **** to get that
straightened out. Finally when I'm thinking COOL!!! I DON'T HAVE TO DEAL WITH THEM
ANY MORE. It was so stressful anytime I needed anything, I would alway end up having
to do their jobs for them, I am the one that is sick and they are the ones getting paid
for me doing their jobs. (altho I have actually kept copies of every test and also the
actual Nero reports ect... during the period of Dx ing and continued care.)
Now I get the strangest phone call from the new Nero's office. Get This!!! She says
well the doc said he is not so sure this is MS but will see you for a consultation!
WHAT?????? I said what?? And she said well there isn't alot in your file. I said
Did he see my MRI and MRI report is that in the file? She says well no. I said, is
the testing results in there for my evoked potential studies? she say well yes those
are in there.
Then I said did they send the reports form my optho and urologist? she says no.
OMG!!! My head is spinning at this point.
She tells me in this case the doc will see me in October, I cant believe this.
So I start to explain abit about how I am not well , and that I was on the copaxone
and the meds ect. And that right now I am without the DMD treatment. ect.
She sounded dum founded. I was so flustered, that I took the appointment and got
off the phone. Now I have been fuming since yesterday. The call was so strange
I am as of now putting it together that maybe they left out alot of my other Nero report
showing that he Dx'x me. ect..... and that is why they pushed my appt. out so far.
Well I got the actual Nero reports from the appointments where he dx's me and put
me on copaxone ect.
This lady seemed abit taken back when I told her that I had been on the copaxone and
had been dx's. I'm thinking that they didn't sent that to the new Nero??????
So now what do I do??? I need some good advice, because I'm fuming right now and
I don't want to be calling and sounding like a screaming memeee, all over the place.
Because I don't know exactly what else was not in my records.
Oh and I also informed the lady at the new office that I have all my own copies of everything.
also CD of MRI ect...... right down to all the blood work. And she say well Just bring
it with you when you come, and the Doc can decide from there, on your continued care.
Further more!!!! how could the MS specialist tell this lady to call me and say that he
is not so sure this is ms???? If he hasn't even seen my MRI and all the other info form
the old Nero.
I cannot believe this is happening. ( I have several other issues going on with the ruemy
for fibro and arthritis issues on top of all this alot of pain).
I feel to dragged out and ill right now to be trying to advocate for myself which I normally
could handle.
Please I would love to hear from anyone or all on some good advice, I feel like the old
Nero's office help had given me a black mark at the new Nero's office.
WarKitten 2008
LOL Quix....... Dont get me started on my scratching post. lol
But Yes your right, they would make great condiments lol and Im sure
at least half the neros would love to join the BBQ for that one Ha Ha..
WarKitten 2008
But Yes your right, they would make great condiments lol and Im sure
at least half the neros would love to join the BBQ for that one Ha Ha..
WarKitten 2008
Office staff make great condiments for the BBQ! They're spicy, a little slow to cook, and leave an angry aftertaste.
Hi La:
Yes I agree, I have gotten a ton of great advice here. Several thing I would never
have thought to do.
So you have problems with the staff too??? Gee I wonder if we should be having
staff roast on here instead of the nero roast or both lol
I have in my last few appointment with pcp, started to update them and catch them
up. I was very suprised at how well they keep my files documented there. they even
remember things that I had forgotten lol.
I wont give up my own file copies of anything. I have seen how important it is to
have each and every copy of my own.
I will only make copies for them.
Thank you for adding that thought and the time to wish me well WarKitten2008
Yes I agree, I have gotten a ton of great advice here. Several thing I would never
have thought to do.
So you have problems with the staff too??? Gee I wonder if we should be having
staff roast on here instead of the nero roast or both lol
I have in my last few appointment with pcp, started to update them and catch them
up. I was very suprised at how well they keep my files documented there. they even
remember things that I had forgotten lol.
I wont give up my own file copies of anything. I have seen how important it is to
have each and every copy of my own.
I will only make copies for them.
Thank you for adding that thought and the time to wish me well WarKitten2008
I am so sorry to hear this! I think you have gotten some really great advice here.
Be sure to make copies of everything. Don't give up your copies.
I have been so frustrated with my PCP office I have started writing letters updating my PCP on my health issues directly to my doctor bypassing his staff.
He does not seem to mind and even writes me back!
LA
Be sure to make copies of everything. Don't give up your copies.
I have been so frustrated with my PCP office I have started writing letters updating my PCP on my health issues directly to my doctor bypassing his staff.
He does not seem to mind and even writes me back!
LA
Hello Quix:
Very good insite here. Thank You for your response!!!! I hadnt thought of doing
somthing along those lines. That is some real mover and shaker stuff there.
along with a few others from above.
After my Pcp appt on the 12th , if all goes well, I may copy my whole file and
go and get another copy made of my MRI cd and drive it over to the new MS
office. I live almost an hour one way to the new office. so 2 hour round trip
shouldnt be to bad.
I agree with you 100% that not all my file got sent. There was no reason for that
its not like they split the file up and keep in three different places. Its all in one
file, And they dont send it all as requested on the release fourm..?? the staff gets to pick and choose??? lol Road block
loud and clear there. lol
Well Thank You again, in helpling to add in the aid if getting my confidence and
objectivitiy back. I will keep you all posted on the outcome. WarKitten 2008
Very good insite here. Thank You for your response!!!! I hadnt thought of doing
somthing along those lines. That is some real mover and shaker stuff there.
along with a few others from above.
After my Pcp appt on the 12th , if all goes well, I may copy my whole file and
go and get another copy made of my MRI cd and drive it over to the new MS
office. I live almost an hour one way to the new office. so 2 hour round trip
shouldnt be to bad.
I agree with you 100% that not all my file got sent. There was no reason for that
its not like they split the file up and keep in three different places. Its all in one
file, And they dont send it all as requested on the release fourm..?? the staff gets to pick and choose??? lol Road block
loud and clear there. lol
Well Thank You again, in helpling to add in the aid if getting my confidence and
objectivitiy back. I will keep you all posted on the outcome. WarKitten 2008
Why Thank You Happyname!!!
That was so sweet that you would question the doctors you work for on my behalf!!!
I am truly grateful. As I stated above to Rena, I am going to take it all to my pcp
next week well on the 12th anyway.
And now that I have that bit of inside info from you, I will feel much more confident
about talking to my Pcp. Once again thank you so much. Boy You all got me
out of a really bad mood from the last couple days!!!! My meds are starting to
kick in now too, and my pain level is quite aways down at the moment!
WarKitten2008
That was so sweet that you would question the doctors you work for on my behalf!!!
I am truly grateful. As I stated above to Rena, I am going to take it all to my pcp
next week well on the 12th anyway.
And now that I have that bit of inside info from you, I will feel much more confident
about talking to my Pcp. Once again thank you so much. Boy You all got me
out of a really bad mood from the last couple days!!!! My meds are starting to
kick in now too, and my pain level is quite aways down at the moment!
WarKitten2008
Hi, I don't have the visual energy to read all that people have written here so I hope I am not repeating things.
The old Neuro's office scr*wed up and didn't send enough info to make your situation clear. I am pretty sure that is what happened. I do not think the old guy gave you a black mark with the new guy, just didn't send any info along to help. So, the call from the new office would have been a little bewildering. I doubt that the new office is really doubting you, they just didn't have any clue that all this stuff had been tested and that you were coming in having been on a DMD.
In my view, the old Neuro needs a firm letter describing all of this and stating that if a proper transfer of records (ALL RECORDS includes notes, clinical notes, all test results, all lab results and all correspondence) doesn't happen, you will have to consult an attorney and file a complaint with the Forida Board of Medical Examiners. This letter should tell him that the roadblocks set up by his staff kept you from getting prompt care on many occasions and that is why you are transferring.
Just so everyone knows. A bad front desk can sink a doctor, but more often than not, the front desk is performing exactly as the doc wants it to to keep the patients "at bay." They need to know that this behavior can have repercussions.
If your appointment with the new Neuro is a ways out then you should copy everything you have and make an appointment with the new office's office manager. Give the file to him/her and explain what you have been through with the old guy (briefly) and that is why you are switching. Ask that she give it to the doc to review before you are seen. Your first appointment won't be wasted reinventing the wheel.
The letter should be sent to him "Personal and Confidential" and sent certified, return-receipt requested.
Believe me that will get results.
Quix
The old Neuro's office scr*wed up and didn't send enough info to make your situation clear. I am pretty sure that is what happened. I do not think the old guy gave you a black mark with the new guy, just didn't send any info along to help. So, the call from the new office would have been a little bewildering. I doubt that the new office is really doubting you, they just didn't have any clue that all this stuff had been tested and that you were coming in having been on a DMD.
In my view, the old Neuro needs a firm letter describing all of this and stating that if a proper transfer of records (ALL RECORDS includes notes, clinical notes, all test results, all lab results and all correspondence) doesn't happen, you will have to consult an attorney and file a complaint with the Forida Board of Medical Examiners. This letter should tell him that the roadblocks set up by his staff kept you from getting prompt care on many occasions and that is why you are transferring.
Just so everyone knows. A bad front desk can sink a doctor, but more often than not, the front desk is performing exactly as the doc wants it to to keep the patients "at bay." They need to know that this behavior can have repercussions.
If your appointment with the new Neuro is a ways out then you should copy everything you have and make an appointment with the new office's office manager. Give the file to him/her and explain what you have been through with the old guy (briefly) and that is why you are switching. Ask that she give it to the doc to review before you are seen. Your first appointment won't be wasted reinventing the wheel.
The letter should be sent to him "Personal and Confidential" and sent certified, return-receipt requested.
Believe me that will get results.
Quix
Hi AiMelissa:
Hummm I like the idea of the case manager at the insurance Co. I am going
to call my ins co and see if they provide that type of assistiance. for future
reference. And maybe put a bug in their ear about the old nero staff..
And I so love the fact that you went in and sat in that doc office like that lol
is that even leagal lol. I sure bet the staff didnt like that either, but it sure
would be effective. I love it.
Im so glad you did it too, as you were not well and knew it. Thank Goodness
it worked out for youl I hope you gave all the office staff a big snickering smile
on you way out the door. And if your still using that office, I hope they have
changed their ways since. Thanks so much for you great totaly effective
ideas.
WarKitten2008
Hummm I like the idea of the case manager at the insurance Co. I am going
to call my ins co and see if they provide that type of assistiance. for future
reference. And maybe put a bug in their ear about the old nero staff..
And I so love the fact that you went in and sat in that doc office like that lol
is that even leagal lol. I sure bet the staff didnt like that either, but it sure
would be effective. I love it.
Im so glad you did it too, as you were not well and knew it. Thank Goodness
it worked out for youl I hope you gave all the office staff a big snickering smile
on you way out the door. And if your still using that office, I hope they have
changed their ways since. Thanks so much for you great totaly effective
ideas.
WarKitten2008
Hi Warkitten,
I was ranting a little with the doctors that I work for today after this discussion last night and even they weren't shocked to hear that this happens to people in our situation. I didn't really give many details but each of them tell me that they routinely make calls to other specialists to get our patients good care. This definitely made me feel that you should take advantage of the fact that your primary is a good doctor and let him make a call for you. I went back through my own records and there are notations from my very first 6 months of care actually stating that he wanted to follow me to make sure this wasn't in my head...in medical terms of course. After reading that and knowing that your new neuro doctor only got bits and pieces of your file I figure that one tiny little phone call from a primary doctor who knows you and will vouch for your symptoms will go a long way. It sure does in our office! I also read my own journal from that time and I think that I was in so much pain that I sounded frustrated and loopy. I had a copy of a quote from my grandma in there (she has since passed away so it means even more) and it said to tell my doctor that - I may not be right but I'm never wrong! Basically, I took from that to own my feelings and to heck with everyone who gets in the way. Now, I go to my doctors appointments with notes filled with questions and I feel like I own my visits. If I can't control my body then I can at least control that. I can't tell you that my way is the best but I hope you are able to find a way to feel good about you situation. Take care of yourself and I will be thinking of you.
Joy
I was ranting a little with the doctors that I work for today after this discussion last night and even they weren't shocked to hear that this happens to people in our situation. I didn't really give many details but each of them tell me that they routinely make calls to other specialists to get our patients good care. This definitely made me feel that you should take advantage of the fact that your primary is a good doctor and let him make a call for you. I went back through my own records and there are notations from my very first 6 months of care actually stating that he wanted to follow me to make sure this wasn't in my head...in medical terms of course. After reading that and knowing that your new neuro doctor only got bits and pieces of your file I figure that one tiny little phone call from a primary doctor who knows you and will vouch for your symptoms will go a long way. It sure does in our office! I also read my own journal from that time and I think that I was in so much pain that I sounded frustrated and loopy. I had a copy of a quote from my grandma in there (she has since passed away so it means even more) and it said to tell my doctor that - I may not be right but I'm never wrong! Basically, I took from that to own my feelings and to heck with everyone who gets in the way. Now, I go to my doctors appointments with notes filled with questions and I feel like I own my visits. If I can't control my body then I can at least control that. I can't tell you that my way is the best but I hope you are able to find a way to feel good about you situation. Take care of yourself and I will be thinking of you.
Joy
I am SO sorry that you are going through this. I have had issues in the past as well. When I was pregnant I was not getting the medications I needed for my extreme sickness. I called my insurance company and they hooked me up with a case manager. The case manager called my doctor and I had a phone called that afternoon, and an appointment with my doc and the zofran pump the next morning. LOL I guess when they thought they wouldn't get paid they got on the ball.
The other thing I did with different doctor (hepatologist for my liver disease) was went to his office and sat there until I was seen. I was so fed up and so sick and was not waiting 6 weeks for an appointment. The office people were angry but I didn't care. I got in with the doctor after 3 1/2 hours of waiting (I "checked in" every 30-45 minutes) and he was very glad that I did.
I don't know if you are able to do either but they are very effective, lol. If you do show up at the office bring ALL of your records. I was prepared to come back the following day if they hadn't seen me. I was at the end of my rope (and hospitalized when I saw the hepatologist because I was quite ill).
Good luck to you. I hope that you get some answers and the care you deserve soon.
The other thing I did with different doctor (hepatologist for my liver disease) was went to his office and sat there until I was seen. I was so fed up and so sick and was not waiting 6 weeks for an appointment. The office people were angry but I didn't care. I got in with the doctor after 3 1/2 hours of waiting (I "checked in" every 30-45 minutes) and he was very glad that I did.
I don't know if you are able to do either but they are very effective, lol. If you do show up at the office bring ALL of your records. I was prepared to come back the following day if they hadn't seen me. I was at the end of my rope (and hospitalized when I saw the hepatologist because I was quite ill).
Good luck to you. I hope that you get some answers and the care you deserve soon.
Hi Rena
I do think you have a good point on the fact that I should tell the pcp about
the MS guy not getting all the records and saying he is not so sure this is
MS, and Im going with out treatment. So, You made a light go off in my head.
I will bring my whole nero file to my pcp on the 12th and make sure they see
it all. then enlighten them as to why the new ms guy thinks maybe this isnt MS.
the pcp will see for themselves, that he didnt get a complete file on me from the
old nero. And if they dont get it, I will spell it out for them. Then they may do
some calling for me. I hate to get them involved like this but i guess thats what
they are there for. Im so luck to have them in my corner.
and all of you here as well. thanks again WarKitten
I do think you have a good point on the fact that I should tell the pcp about
the MS guy not getting all the records and saying he is not so sure this is
MS, and Im going with out treatment. So, You made a light go off in my head.
I will bring my whole nero file to my pcp on the 12th and make sure they see
it all. then enlighten them as to why the new ms guy thinks maybe this isnt MS.
the pcp will see for themselves, that he didnt get a complete file on me from the
old nero. And if they dont get it, I will spell it out for them. Then they may do
some calling for me. I hate to get them involved like this but i guess thats what
they are there for. Im so luck to have them in my corner.
and all of you here as well. thanks again WarKitten
Hi honey...I agree that you can simply take your information to the neuro in October BUT I still think you need to inform your pcp. If you want to do it by first telling them this appt. is in October to see what they say that is fine but you should still let the pcp know that the appropriate information was not sent to the new neuro and that because of that the new neuro does not think that I have MS but has agreed to see you on a consulation basis. Personally, I would be all over this simply because you were previously diagnosed and on the DMD's and I would want to ensure that the DMD's were continued for my own health's sake.
However, you do what ever you see is fit and let us know what happens ok? We will all be anxious to hear what goes on at that pcp appointment next week. Best of luck and we will hear from you soon!
Lots of hugs,
Rena
However, you do what ever you see is fit and let us know what happens ok? We will all be anxious to hear what goes on at that pcp appointment next week. Best of luck and we will hear from you soon!
Lots of hugs,
Rena
Wow Hi All:
Thank You all so much, these are some great ideas to work with, and I will
certianly consider them all.
Sllowe: Im not so sure a letter to my old nero will do any good in changing
his staffs attitudes. I had made a firm but polite complaint directly to the
office manager several months back. Then it got blatenly outright worse.
You could sometimes almost hear the snicker in their voices over the phone
when they knew I was waitting on important stuff.
Brandi: yes I will still keep the appointment with the MS specialist. I have made
up my mind on that for sure. Things were so bad at the old place that I just dont
even want to go in there ever again. I can not deal with that type of mentality.
I have givien them plenty of opportunity to change things around, to no avail.
Momzilla: Yes the frustration is horrible, that is what promted me to finally
write in to the fourm here. The office staff there was so bad as I said to
Brandi, I just absolutley refuse to walk in there ever again reguardless of my
situation. So this must tell you how bad it reallly was, as my health is pretty
important to me. I guess I just lost the trust and confidence for my nero,
and had started to even question his judgment due to his staff.
( I do feel bad for him in that respect, its not really his fault) but the way I
see it he has his good health and paycheck. so it wont bother him for long
if Im not his pacient anylonger. (just think, I paid good amounts in co pays
to see him and my insurance paid good money for me to see him and be
treated.) So they all got paid and I have got no care. unreal.
Rena: I have followed a great deal of your story while lurking lol. But I reallize
you have it worse than I do, and I truly truly feel for you. I cant imagine how
you have coped with all of that. ( it can be a lonley and scary feeling when
somthing is so medically wrong and you get ignored) on another note Im so
happy that you finally got your disability pay started. fantastic news I hope
it will take some of the pressure off you.
Oh and my pcp office had not been sent alot of my updates from the old nero
since I had been dx'ed . I have a follow up with my pcp in another week. I know
they will want to know when I will be seeing the specialist. I think let me know
if you agree, that I will just tell them when the appt is, without gettiing into
to much detail. just see what they say. I have all my records test results and
all. I have a better file than any of them.
So I will bring the whole thing to my MS guy and then see what he has to say.
Thank you all so much !!!!! this has been a huge help to me. Im starting to relax
now, lol.
This is the first time I have been on a rant and boy, it has helped so much. I feel
much more objective now!! and mabe one day I will write the old nero a letter,
but I will wait till after I have seen the MS guy first.
WarKitten2008
dx'ed.
Thank You all so much, these are some great ideas to work with, and I will
certianly consider them all.
Sllowe: Im not so sure a letter to my old nero will do any good in changing
his staffs attitudes. I had made a firm but polite complaint directly to the
office manager several months back. Then it got blatenly outright worse.
You could sometimes almost hear the snicker in their voices over the phone
when they knew I was waitting on important stuff.
Brandi: yes I will still keep the appointment with the MS specialist. I have made
up my mind on that for sure. Things were so bad at the old place that I just dont
even want to go in there ever again. I can not deal with that type of mentality.
I have givien them plenty of opportunity to change things around, to no avail.
Momzilla: Yes the frustration is horrible, that is what promted me to finally
write in to the fourm here. The office staff there was so bad as I said to
Brandi, I just absolutley refuse to walk in there ever again reguardless of my
situation. So this must tell you how bad it reallly was, as my health is pretty
important to me. I guess I just lost the trust and confidence for my nero,
and had started to even question his judgment due to his staff.
( I do feel bad for him in that respect, its not really his fault) but the way I
see it he has his good health and paycheck. so it wont bother him for long
if Im not his pacient anylonger. (just think, I paid good amounts in co pays
to see him and my insurance paid good money for me to see him and be
treated.) So they all got paid and I have got no care. unreal.
Rena: I have followed a great deal of your story while lurking lol. But I reallize
you have it worse than I do, and I truly truly feel for you. I cant imagine how
you have coped with all of that. ( it can be a lonley and scary feeling when
somthing is so medically wrong and you get ignored) on another note Im so
happy that you finally got your disability pay started. fantastic news I hope
it will take some of the pressure off you.
Oh and my pcp office had not been sent alot of my updates from the old nero
since I had been dx'ed . I have a follow up with my pcp in another week. I know
they will want to know when I will be seeing the specialist. I think let me know
if you agree, that I will just tell them when the appt is, without gettiing into
to much detail. just see what they say. I have all my records test results and
all. I have a better file than any of them.
So I will bring the whole thing to my MS guy and then see what he has to say.
Thank you all so much !!!!! this has been a huge help to me. Im starting to relax
now, lol.
This is the first time I have been on a rant and boy, it has helped so much. I feel
much more objective now!! and mabe one day I will write the old nero a letter,
but I will wait till after I have seen the MS guy first.
WarKitten2008
dx'ed.
Hi there and welcome to the MS forum! I am so sorry to hear of the horrible treatment you have received from the staff at your Neurologists office and I hate to say that I have been in a similar situation in the past.
If you have a good relationship with your pcp, you need to let him/her know immediately what is going on. If you have your pcp backing you up things can go a lot more smoothly than without that support. I would ask your pcp if he/she can send a letter to or make a phonecall to the old neuro explaining the situation you have described and that the lack of competence in his staff has put you in a precarious situation. You need to be on the DMD's and being that it is only a neurologist that can deem you require them, you need to be seen by a neuro right away and you cannot wait until October. Due to the fact that all the pertinent information was not sent to the new neurologist by his staff, the new neuro doesn't feel that you have MS and yet apparently the tests results had made it clear to the old neuro that you do! It is important that your pcp is aware of the situation, not only to help in your case but to ensure that other patients are not referred to this office until this problem is rectified.
Then you need to have your pcp send your results STAT to the new Neuro's office with a request that they be seen immediately by the Neurologist. Hopefully that way you will be seen by him sooner and you can get back on the DMD's sooner.
This sort of thing is not uncommon unfortunately and I really hope that you will be able to rectify the situation soon. I know that Sllowe suggested that I would be a good one to talk to about this but to be honest, I don't have the magic answer. I am still fighting to see a neurologist because I have been having symptoms since last July and because my Neuro has deemed my disease as "in-active" I have been denied the DMD's and because my gp knows nothing about MS she will not refer me to a new neurologist. It is a long story but what it boils down to is that my Neuro has her panties in a know because I stopped seeing her last Feb. 2007 due to another neurological problem because she said she couldn't see me for 3 days and due to excrutiating pain I needed IV steroids immediately so I had to see someone else. This someone else turned out to be a Neuro I had seen in the past and said that he would treat me for this problem as long as I saw no one else about it so I stopped seeing Neuro #1.
Neurologists seem to have very large and yet very tender ego's and I think if we cause their egos even the slightest bruise, we are then branded as trouble makers and this is not a good place to be. I WARN YOU to tread very carefully in your situation because as the MS Society of Canada told me "if we were to give you the name of a new neurologist and if by chance you were seen by a new neurologist and your old one found out (which is highly likely in this old boys group) you would be black-balled and then you would have no care! My response was "so what...I am getting no care now"! Please be very careful about whatever you decide to do and think it through very throughly because you could end up in a very sticky situation when you need the help the most.
I will help as much as I can ok but you have to make the final decisions as to what you are going to do. I don't know the old neuro or the new one but you are at an advantage in that you get along with the old one and perhaps between you, your pcp and the old neuro you can work something out.
I wish you all the luck in the world with this honey and I really hope that your PCP is as caring and good as you say...unfortunately I thought mine was wonderful but it certainly has not worked out that way for me. Please keep us updated as to how you are progressing ok and we will do our best to help along the way.
Lots of Hugs,
Rena
If you have a good relationship with your pcp, you need to let him/her know immediately what is going on. If you have your pcp backing you up things can go a lot more smoothly than without that support. I would ask your pcp if he/she can send a letter to or make a phonecall to the old neuro explaining the situation you have described and that the lack of competence in his staff has put you in a precarious situation. You need to be on the DMD's and being that it is only a neurologist that can deem you require them, you need to be seen by a neuro right away and you cannot wait until October. Due to the fact that all the pertinent information was not sent to the new neurologist by his staff, the new neuro doesn't feel that you have MS and yet apparently the tests results had made it clear to the old neuro that you do! It is important that your pcp is aware of the situation, not only to help in your case but to ensure that other patients are not referred to this office until this problem is rectified.
Then you need to have your pcp send your results STAT to the new Neuro's office with a request that they be seen immediately by the Neurologist. Hopefully that way you will be seen by him sooner and you can get back on the DMD's sooner.
This sort of thing is not uncommon unfortunately and I really hope that you will be able to rectify the situation soon. I know that Sllowe suggested that I would be a good one to talk to about this but to be honest, I don't have the magic answer. I am still fighting to see a neurologist because I have been having symptoms since last July and because my Neuro has deemed my disease as "in-active" I have been denied the DMD's and because my gp knows nothing about MS she will not refer me to a new neurologist. It is a long story but what it boils down to is that my Neuro has her panties in a know because I stopped seeing her last Feb. 2007 due to another neurological problem because she said she couldn't see me for 3 days and due to excrutiating pain I needed IV steroids immediately so I had to see someone else. This someone else turned out to be a Neuro I had seen in the past and said that he would treat me for this problem as long as I saw no one else about it so I stopped seeing Neuro #1.
Neurologists seem to have very large and yet very tender ego's and I think if we cause their egos even the slightest bruise, we are then branded as trouble makers and this is not a good place to be. I WARN YOU to tread very carefully in your situation because as the MS Society of Canada told me "if we were to give you the name of a new neurologist and if by chance you were seen by a new neurologist and your old one found out (which is highly likely in this old boys group) you would be black-balled and then you would have no care! My response was "so what...I am getting no care now"! Please be very careful about whatever you decide to do and think it through very throughly because you could end up in a very sticky situation when you need the help the most.
I will help as much as I can ok but you have to make the final decisions as to what you are going to do. I don't know the old neuro or the new one but you are at an advantage in that you get along with the old one and perhaps between you, your pcp and the old neuro you can work something out.
I wish you all the luck in the world with this honey and I really hope that your PCP is as caring and good as you say...unfortunately I thought mine was wonderful but it certainly has not worked out that way for me. Please keep us updated as to how you are progressing ok and we will do our best to help along the way.
Lots of Hugs,
Rena
Oh, my!
I am very sorry for this awful situation. How frustrating it must be for you!
If you are happy with your neuro, and just not his staff, why leave? As too many of us know around here -- Good neuros are hard to find!!
I would do as Brandisnif suggested and hand deliver a letter to your doctor, stating that while you are very well-pleased with his treatment of you, and with your relationship, you find it impossible to deal with his staff.
Let him know that they keep dropping the ball when it comes to your medication (ordered by him!) and the other things they have slacked off on. Tell him that if his staff cannot follow the simple instructions of getting your DMDs to you in a timely manner, then you will have to find another office, and how sad that would make you, since you are happy with him as a doctor.
Try that. And in the meantime, get your PCP to work on getting your records for you from the neuro's office. Your PCP should have copies of all that in your chart in HIS or HER office, too. That way, if you do need to keep the appointment with the new neuro, you will have a complete picture of yourself, so you can have a more fluid transition, and get those DMDs.
I bet your neuro has some idea of what is going on in his office, and just needs someone like you to call him on it. Make him 'cowboy up!'
Good luck and let us know how things go. This is SO important!
Feel well,
Zilla*
I am very sorry for this awful situation. How frustrating it must be for you!
If you are happy with your neuro, and just not his staff, why leave? As too many of us know around here -- Good neuros are hard to find!!
I would do as Brandisnif suggested and hand deliver a letter to your doctor, stating that while you are very well-pleased with his treatment of you, and with your relationship, you find it impossible to deal with his staff.
Let him know that they keep dropping the ball when it comes to your medication (ordered by him!) and the other things they have slacked off on. Tell him that if his staff cannot follow the simple instructions of getting your DMDs to you in a timely manner, then you will have to find another office, and how sad that would make you, since you are happy with him as a doctor.
Try that. And in the meantime, get your PCP to work on getting your records for you from the neuro's office. Your PCP should have copies of all that in your chart in HIS or HER office, too. That way, if you do need to keep the appointment with the new neuro, you will have a complete picture of yourself, so you can have a more fluid transition, and get those DMDs.
I bet your neuro has some idea of what is going on in his office, and just needs someone like you to call him on it. Make him 'cowboy up!'
Good luck and let us know how things go. This is SO important!
Feel well,
Zilla*
So sorry everything you have been going through. I say keep the appt. I just escaped from a horrible neuro! The notes I got were wrong too,my new neuro pretty much dismissed them and is starting from scratch. Just so you know I was calling for months (about 6) just trying to get an appt with the specialist. I finally got a call back and was ablt to take a cancelled appt at the last minute. This Dr. just may be a busy office. I know my new one is, and most times my appt are late,but I wouldn't give her up for anything!
Hey WKitten,
Welcome! You must be frustrated. Our very own "Rena" has fought her way through madness of a similiar nature. Might want to consider sending them a letter. Hand it directly to the Dr. or something.
See you around!
Shelly
Welcome! You must be frustrated. Our very own "Rena" has fought her way through madness of a similiar nature. Might want to consider sending them a letter. Hand it directly to the Dr. or something.
See you around!
Shelly
Hi Happy:
Thank you for the reply. I cannot believe this is happening. I do have all my records,
even the old neros reports showing that he Dx's me and have been recieving treatment
for MS with DMD's ect.
I was so shocked when the lady on the phone said that about the new nero not being
so sure this is MS since I have been under treatment for this since feb 2008.
and to top it off, he hasnt even seen my MRI or the MRi report!!! ??
The lady on the phone was not going to budge on the appointment date and told me
to just bring what I have in my file and ofcourse the MRI to the appointment.
I am now left wondering several things:
Did the old office mess with my file due to lack of confidence in my MS Dx?
I know they are incompetent there, but I find it hard to believe it could be that
bad.
I am now sittting here with a Dx of MS, (to add to the list of others I have). And
have no DMD's at this point. And no continued care for another 2 months.
As the new guy only based by appointment on what was sent to him.
So now Im really confused about weather I really have MS !!!!
Meantime, I did do what you suggest, and my primary has started me on lyrica
and some pain meds. and I have provigil to use on the days I need it.
My pcp office has been awsome in all this. But they dont know yet about
what happened with the new appointment with the MS specialist. I have yet to
tell them. I was wondering if I even should tell them, as they may think Im crazy.
I am even finding this alittle unbelieveable myself and very hard to digest.
If it werent for reading on this board about what others go threw with their neros
I might just think I was crazy and imagining all this myself.
There is one thing tho that I have not said which I should make clear.
I did and still do like the old Nero himself, he seemed to take an intrest
during my appointmenst ect... so I did have confidence in him.
Untill I realized that if his office staff was never going to follow threw with
my orders from the doc, I then realized I would never get the proper care I need.
This is why I signed the release fourm for continued care with the MS specialist
in the first place.
So now I sit here wondering if I really have MS.
sorry to rant on like this, and thankyou for listening. I really need to blow of steam
and get this out of my system so I can objectively handle the situation.
On the flip side I also have a bad ruemy I am dealing with, so primary is helping
with meds and following up with me every 2 weeks.
thanks Happy!
I would love to hear what others think as well, hope to hear form ya's
WarKitten2008
Thank you for the reply. I cannot believe this is happening. I do have all my records,
even the old neros reports showing that he Dx's me and have been recieving treatment
for MS with DMD's ect.
I was so shocked when the lady on the phone said that about the new nero not being
so sure this is MS since I have been under treatment for this since feb 2008.
and to top it off, he hasnt even seen my MRI or the MRi report!!! ??
The lady on the phone was not going to budge on the appointment date and told me
to just bring what I have in my file and ofcourse the MRI to the appointment.
I am now left wondering several things:
Did the old office mess with my file due to lack of confidence in my MS Dx?
I know they are incompetent there, but I find it hard to believe it could be that
bad.
I am now sittting here with a Dx of MS, (to add to the list of others I have). And
have no DMD's at this point. And no continued care for another 2 months.
As the new guy only based by appointment on what was sent to him.
So now Im really confused about weather I really have MS !!!!
Meantime, I did do what you suggest, and my primary has started me on lyrica
and some pain meds. and I have provigil to use on the days I need it.
My pcp office has been awsome in all this. But they dont know yet about
what happened with the new appointment with the MS specialist. I have yet to
tell them. I was wondering if I even should tell them, as they may think Im crazy.
I am even finding this alittle unbelieveable myself and very hard to digest.
If it werent for reading on this board about what others go threw with their neros
I might just think I was crazy and imagining all this myself.
There is one thing tho that I have not said which I should make clear.
I did and still do like the old Nero himself, he seemed to take an intrest
during my appointmenst ect... so I did have confidence in him.
Untill I realized that if his office staff was never going to follow threw with
my orders from the doc, I then realized I would never get the proper care I need.
This is why I signed the release fourm for continued care with the MS specialist
in the first place.
So now I sit here wondering if I really have MS.
sorry to rant on like this, and thankyou for listening. I really need to blow of steam
and get this out of my system so I can objectively handle the situation.
On the flip side I also have a bad ruemy I am dealing with, so primary is helping
with meds and following up with me every 2 weeks.
thanks Happy!
I would love to hear what others think as well, hope to hear form ya's
WarKitten2008
Hi,
I am so sorry to hear about your experience. I originally had a specialist in MS here in Dallas at a very well know research hospital. I got a letter in the mail telling me that my doctor was no longer there and that I would not be able to get another appt for 3 months when I had one with the missing doctor the next week. I work for doctors and still couldn't get my records in a timely fashion. I had to go to every MRI center etc to get copies myself. I scheduled a consult with my new neuro and didn't say a word about my problems. I just figured that maybe I would get his opinion then whip out my paperwork. I got lucky and he was wonderful. He immediately ordered his own MRI because he preferred a different radiologist who reads all of his tests. With the exception of labs I started from scratch and all of my meds are ordered the day I'm there. My MRI was auth'd on the spot and this is a huge group of doctors.
Anyway, basically there is just no excuse for what you are having to go through. It is likely that his practice it too large since it seems there are not enough neuro doctors anywhere. If you have a primary doctor they will often make a call to get you moved to an earlier appt or my insurance company provides case managers for this type of thing. Either way I would file a written complaint to your insurance carrier and the state board. Good luck and don't let them make you feel like that. It is still your body and you are allowed as many opinions from other doctors that it takes to find one who is a good fit for you.
I am so sorry to hear about your experience. I originally had a specialist in MS here in Dallas at a very well know research hospital. I got a letter in the mail telling me that my doctor was no longer there and that I would not be able to get another appt for 3 months when I had one with the missing doctor the next week. I work for doctors and still couldn't get my records in a timely fashion. I had to go to every MRI center etc to get copies myself. I scheduled a consult with my new neuro and didn't say a word about my problems. I just figured that maybe I would get his opinion then whip out my paperwork. I got lucky and he was wonderful. He immediately ordered his own MRI because he preferred a different radiologist who reads all of his tests. With the exception of labs I started from scratch and all of my meds are ordered the day I'm there. My MRI was auth'd on the spot and this is a huge group of doctors.
Anyway, basically there is just no excuse for what you are having to go through. It is likely that his practice it too large since it seems there are not enough neuro doctors anywhere. If you have a primary doctor they will often make a call to get you moved to an earlier appt or my insurance company provides case managers for this type of thing. Either way I would file a written complaint to your insurance carrier and the state board. Good luck and don't let them make you feel like that. It is still your body and you are allowed as many opinions from other doctors that it takes to find one who is a good fit for you.
Hi I just re read my post, please forgive all the typo's. I had typed this up
in word pad, and when I cut and pasted it in here it posted and broke up
all my phargraphs. yeesh.
I wish I knew what to think about the above situation, and what the implications
could mean for me.
Hope to hear form you All WarKitten2008
in word pad, and when I cut and pasted it in here it posted and broke up
all my phargraphs. yeesh.
I wish I knew what to think about the above situation, and what the implications
could mean for me.
Hope to hear form you All WarKitten2008
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