frustration:{

[pennst8r]

I haven't written in a while, but have been reading. I had several really good days last week, then hit a brick wall again. Every time I have a good day, I think, "cool, I'm finally done with this." Then I'm PO'd when it comes back. Anyway, sorry for the vent - sort of slipped out. What I was posting about was trying to get my OWN (fill in your own expletives here) records. One of my Dr's (the ENT I was sent to first) sent my records. The neuro is blocking me with everything he's got. I received a HIPAA non-compliance form today stating they couldn't release my records because I didn't have the "proper info" - everything they cited as being absent was in my request - because of my work I am more familiar with HIPAA than I ever wanted to be. I know what needs to eb inthe request, and darn it, I know I have a right to my own records. According to the Federal Privacy Act, they have 10 business days to cough up the records (did my homework on that one - Quix will be proud:)!  I'm told that now I should file a complaint with the US Dept of Human Services Office of Civil Rights. So I guess that's what I have to do. I was hoping to have this info before I see the new neuro 8/3. Fat chance.

OK, so I'm done whining now. I feel a little better - how about you:) Sorry again.

Penn

[pennst8r]

Your last post put that idea in my head (enlisting my PCP's help). I know he's been frustrated as well, because he has only received sporadic copies, not all records. I know there's an issue with giving out "third party" copies (copies not generated by your office), as I am not permitted to do that @ my work. This is why he can't give the other doc's records to me.

Thanks again.

[Annie62]

You're welcome.  Just one more thought--why can't your PCP, whom you like and trust, request your records from the neuro and the other doctor you are trying to get records from and then give you a copy (or wasn't he the one who referred you to these doctors)?  Before I went to Mayo, my old PCP (the one who terminated me), initially didn't want to give me my records to take to Mayo (I know he didn't want me to read what was written about me in them), but Mayo wanted me to hand-carry them with me, so he later agreed and also gave me copies of all the specialists I had seen.  Anyway, your PCP might be able to request them and give you a copy if he doesn't already have them.  Good luck.

[pennst8r]

I did put in my letter that I was trying to complose an accurate timeline of my sypmtoms and treament/ testing that's been done. I further stated that this poses no threat to him. I am within an hour of his offices (both doctors' offices now - there are 2 refusing at this point). I do plan to go there myself - I thought the letter would give them a chance to gather the info. What started out trying to be courteous now has me "ready to rumble". My PCP intends to send me to the Cleveland Clinic if this new neuro I'm due to see 8/3 doesn't impress us quickly, so I really want to have all my records in my possession. Plus, it gets to be a pain when you switch doctors, or are sent to yet another type of specialist, to request records sent form one doc to another over and over again -I'm sure the doc's office managers get tired of it too. I did explain that in my first and second letters to the neuro, as well as this second doc. I may be able to get my PCP to help me with this - he's been my only ally in this so far. He feels there is "stalling" going on, and that the diagnosis is a "no-brainer" (his exact words - I like him, not too serious!).

I did read your posting earlier. Going through this from across the country must have been excruciating! Thanks so much for your suggestions and moral support. It's really appreciated.

Penn

[Annie62]

Pennst8r,

Do you live close enough to go to the neurologist's office in person?  You mentioned your sister sees a neuro in the same practice, so I am assuming this is your hometown area where the neuro is.  I would say there is a 99% chance they are worried about being sued and they are looking for any excuse not to have to give your records to you.  You are right that you shouldn't have to justify or explain why it is you want your records, but it may help to show up in person and let them know exactly why you do want them and ease their minds (not that they deserve it, but it might facilitate your actually getting them).  Sometimes if a doctor (or their staff) can see you in person and see that you aren't angry in appearance/friendly (even though you have every right to be angry), that will go a long way.  If it were I, I would go there in person and actually talk to them.  

Doctors are always worried they are going to be sued.  When I saw two neuros in the past, one asked right in her patient info sheet that you fill out when you first see them if I had ever sued a doctor.  The other neurologist, when I requested my records from him, had a checklist of reasons why I wanted my records, and one of the boxes was "need records for my attorney" and also a signature line promising what was in the records would not be used in any lawsuit.  It is understandable, to some extent, considering the lawsuit-happy nature of Americans, but this fear does not give them the right to refuse your records by any means--which could be detrimental to your well-being.  I just got refused by a very good neurology practice in town (about the only one I haven't seen yet) to see me as a patient-and they will not give me a reason as to why.  A couple weeks later I returned to my PCP and he terminated/dumped me as his patient (he was very nasty about it and left me almost-although not completely-speechless in that appnt.  The next month I saw my gastroenterologist, who has acted "weird" the couple times I've seen him since returning from Mayo and getting confirmation that I do indeed have a neuro problem, and when I asked him to recommend a new PCP, he went into a long speech about how patients don't realize how much doctors have to pay for things, and he started telling me about how much he had to pay for his answering service, health insurance for his employees, etc.  I know he is nervous, I can tell by how fast he talks and his manner has changed towards me.  He talks right over me if I dare to ask a question.  

Almost certainly your neuro is afraid you are going to use something in your records against him (worried that you have found out something/been dxd with something serious since you last saw him and perhaps he didn't take your complaints seriously enough).  I would reassure them that this is not the case, and then after getting your records from them, I would write him a letter and tell him exactly what you think of him and what he did.  

[pennst8r]

I should mention that the second doc I only saw once - it's the testing she ordered I am really interested in. That and the Topamax she ordered, to which I had a terrible reaction. I thought that might be relevant.

The neuro had made some statements that were false, nothing earth-shattering though - that baclofen cannot cause headaches, and that no neuro worth his salt Rx's steroids for symptoms. He himself Rx'd steroids for some of my sister's exaccerbations (she is treated by another doc in his practice - don't think he's made the connection, as our last names are different)! I treid to tell him re my sister being w/ his practice, but his really brief interactions consisted of him talking - the patient gets little or no chance to speak when he is kind enough to enter the room you're in  - usually you only see the CNP.

Sorry, I'm getting on my soapbox again!

Penn

[pennst8r]

I received the same letter from a third party (called "Duplicates") stating that I did not provide the info needed to request the info. I am well acquainted w/ HIPAA becauseof my work, so I know what info I need to include. They included a release of info, which actually had less info than my letter did. I did fill out the release anyway and included it with my second letter. I have not threatened a lawsuit. I did state (in the more recentletter) that if they do not send my records within the 10 business days the law allows, I will file greivances with the insurance company, HIPAA, and the Dept of Health & Human Services Office of Civil Rights. I did also state in the letter sent yesterday that if need be, I would bring an attorney w/ me to pick the records up. I also stated that I wanted the records for purposes of creating a timeline of symptoms and treatment, as well as coordinating my own care. I really don't need to justify to them why I want my records though.

I do think the neuro fears a lawsuit, which I would not do. This other doc, I have no clue what she would be afraid of. The other doc and the MRI facility have simply ignored me. As I said I did sign up for a legal assist. program through work just in case. They state that in most cases, they only need to send a letter to get results. Hope it kicks in pretty quickly. I started trying to get these records some time ago, wanting to have them together prior to the new neuro appt.

Penn

[Quixotic1]

I have never heard of such a thing.  They are actually refusing????  What do they say?  No, we will not release your records?  If that is the case, they are breaking the law and you need to go straight to attorney.  Usually they just don't act. They have excuses, they delay, they send an insignificant part...whatever.  But, an actual refusal?  I can't believe this!!  What are they covering up?  Have you threatened a lawsuit already?  Are they closing ranks and circling the wagons until you present youself legally?

What's up??  Q

[pennst8r]

Just an update... yesterday I sent my repeat request with release form (funny how no release form was needed when the info was going to another doc), my citation of the privacy laws and my intent to show (with attorney in hand if necessary) to all the docs who've yet to release my records. Today I received another refusal from another doc (this one from when they decided I had "migraine associated vertigo" although they admitted it could not explain the spasticity and several other issues). I guess we'll see in the next week or so. Hopefully before my appt with new neuro. I signed up for a legal service thourgh work that I plan to use to help with this records issue if need be - you know, now that I said I would show up atty in hand if need be!

Tons of spasms today, mostly in feet. Usually had been all left side, but right side has started to join the party -- is this wierd? Just to make my weekend dramatic (completely unrelated to neuro issues), I received word form doc that I need to have mammo repeated and ultrasound, as my recent  (and very first) mammogram showed a lump. They want the testing done Monday, so I guess I will be sweating a bit over the weekend. Not too worried - no cancer in family so far -- that odd sound you hear is me knocking on wood:) I always did think I was a bit lumpy -- sorry, bad joke.

Anyway, glad to hear some folks got some answers this week! Been quite a busy little forum we have here lately! So much to read! Wanted to say welcome to all the new "faces" -- you're in good hands here. Listen to the den mother and all her assistant den mothers:)

Penn

[Quixotic1]

You've done the nice things already.  Remember, you OWN all the information in his records.  The actual paper is his.  I am VERY proud of you for looking up your rights.  At this point I would hand deliver a letter spelling out your rights and their time constraints.  Tell them you will involove an attorney to get the records if necessary.  I would still, before I go, FedEx the same letter to then.  They will accept it and FedEx will have the delivery confirmation.  This is acceptable proof of delivery .

There are free legal clinics where you can get such a letter if you can't afford an attorney.  You are doing it right and yes, he is scared.  GOOD!  I wouldn't reassure him of your intent not to sue.  Let him stew and worry about the consequences of his own attitude.

We will cheer you on.  We will stand up for our rights!  Quix

[pennst8r]

Thanks so much for helping me get fired up rather than give up! I may have to organize a "sit in" at his office, but I will get those records. I considered a certifed letter, but figured he wouldn't accept it anyway. I will send another letter, give him a few days and show up on his doorstep to wait for them - maybe with a few large scary men  - I'm not very intimidating on my own:)

Annie - my doc is in the Pittsburgh area - I think he's been here quite a few years (unfortunately). Seems a lot of neuro's have the bedside manner of a badger.

Thanks again, Ladies - you girls rock!!!

Penn

[Annie62]

I read your post above and had to comment.  I had the same thing happen to me in 1999 when I tried to get my records from the very first neurologist I had seen back in '91 in FL.  I lived in PA at the time, had gotten really ill with new-onset neuro symptoms, was sent to an MS specialist up there who was the most obnoxious doctor I have ever seen in my life and who clearly didn't believe there was a thing wrong with me (and also did not believe what I had told him about a past neurologic event that I had had), so I decided I would try to get my records from the Florida neuro so the PA neuro would believe me regarding my symptoms.  I made numerous long-distance phone calls to Florida trying to get those records.  In my case they claimed they couldn't find them.  First they acted like I had never been there and then when I found my bill and told them exactly when I was there, they just kept saying they couldn't find them, asking me if I had changed my last name, gotten married, etc.  I never believed them--it was obvious the girls on the phone were giving me the run-around and were told what to say by the neurologist--their boss.  Finally I sent him a letter certified mail and they sent it back to me unopened--his office wouldn't accept it.

Thanks to this s.o.b. I spent up until December of '06 unsuccessfully trying to convince my doctors and numerous neuros that I was even sick, much less that I had a neurologic problem.  To top it off, the Florida neuro called me in 2002 (after I moved back to my hometown in Florida) just to let me know that my records were purged; in other words, they couldn't find them all those years but then at the 10-year mark they purged them into oblivion and wanted to share that fact with me.  

Don't give up trying to get them, especially if there is any useful information or positive test results--it could cost you years of your life--but even if there isn't you still should get your records from him.  If you live in the same area I would go there in person (if you haven't already) and stand there at the desk until they give them to you.  Tell them you have no intention of suing anyone, but that if you need to take measures to get a copy of your records-which by law belong to you-you may need to consult an attorney.

By the way, you didn't happen to see this neuro in northeastern PA, did you?  That is where the one I saw was located (an MS specialist)-not the one who refused to send me my records ( that was the FL doc), but the one with the very nasty bedside manners (he actually had no manners).

[T-lynn]

Oh , I have names for the muscles in my legs ,but they aren't nice!!!!!  Can not repeat them.

My kids tell me thats one of my favorite expressions (I'm honked off) among many others that I'm sure I'll let slip here sooner or later.

Penn ,make all the noise you need to get them records.I'd be that annoying little mosquito buzzying in there ear all day long.They'd want to give me the records just to shut me up and make me go away.Oh,I'd so have them on speed dial!!!!!

[Momzilla]

Hi, Lisa~~

I think we women spend WAY too much time apologizing to each other!  Enough!  You're angry and have every right to be.  I fully agree with Lynn.  Ten months is a LONG time to wait.  Others have waited longer, it's true, but we're not competing here.   You're not being a baby.

Take Lynn's advice.  Be a squeaky wheel.  They'll want to get rid of you and by giving you the darn records.    The ones you are entitled to.   I'm honked off, too!  (I love that, Lynn!)  And by the way, I have that spasm, too, in my leg.  I swore it was a gopher, which I almost named.  

Be a pest, and don't apologize for it.  You are Penn (Lisa), Hear you roar!    We're behind you, sister!

Chris*

[T-lynn]

I would politely call the neuro's office and re-request the medical records.Now if they done any MRI and so forth you can go right to the facility that provided the services and request copies and they must give them to you.

That neuro is covering his behind side as it is against the law for any facility to with hold medical records,theses are services rendered and paid for.

I'd be honked off to,I'd get to the bottom of it if I had to call everyday all day until I received my records.I'd be a thorn in that mans side.

[pennst8r]

I was just writing a follow up post apologizing to all for my outburst when I saw your post pop up. I really am usually a fairly mild-mannered woman. I was so furious whenI saw that form when I came home from work early (which I REALLY hate to have to do, but just couldn't make it today), that I just threw a good, old-fashioned melt-down.  

I think he knows he did not do the testing he should have and is afraid I'm gathering info for a law suit - but I'm no that kinda girl. Each time I saw this Dr. I got the feeling he was not taking me seriously - not even bothering to be polite. He acted as though like since both my sisters have MS, I must just be paranoid or playing "me too". But he seemed pretty offended when I told him I would not be back if he was not going to pursue a diagnosis of SOMETHING.

My sisters were diagnosed over 15 years ago (I am by far the youngest of 6). If I were going to be paranoid or play "me too", why on earth would I wait 15+ years! My PCP is the only one who seems to take me seriously. Some days it makes me not take MYSELF seriously! (apparently I'm not quite done with my melt down yet) My sisters, being so much older, never really talked about their symptoms (only 1 does now) - I never knew that either had any of the experiences I've been having. I didn't see their symptoms, as they were married and moved away and I was still a kid really. And in my family you just didn't "complain" about things like that. Only now when I mention my issues to my one sister do I find out she had the same thing. She said she never told anyone (things like the "wet spots" on my head, vibrations in feet and hand) because she was afraid they'd think she was nuts.

I'm sorry. Today's one of those days where I just want to give up - thinking maybe I really am just paranoid. I know 10 months is small potatoes for this group, but it's been an eternity to me. My son (just turned 20) thought I was "psycho" till he saw the leg spasms for himself, with the muscle sticking up from my leg. Now he wants to go tell off my (former) doctor.

Anyway, I am so sorry for going on like this - I was never a big baby before all this. Always had been the strong one - still fake it fairly well in public. Thanks so much for listening. I really appreciate it. This group is so great. It helps so much to know I'm not the only one going through this.

Thanks so much.

Penn    (Lisa)

[Momzilla]

Don't be sorry!  What are they afraid of?  Why won't they release your records?  Don't back down!  File that complaint.  Are they afraid of an audit, maybe?  Or are they just trying to make it difficult for you?  If they were afraid of an audit, I guess they wouldn't raise a red flag and make things difficult, but...

Darn them!

Chris*