update "to feel like hit by truck by neuro"

[soccer3]

Well I am sitting there with cath in my arm waiting or my MRI. My medical records were sitting in front of me and so I decided to start reading them. Unbeknownst to me I find a letter written 11/17 (day of that horrible visit) from neuro stating that I was devastated by being told that I did not have MS, that I brought up how I had other auto immune diseses like CFS (he brought that up) I said I was dx by his co-worker with fibro back in 06.

Says that an MS specialist confirmed years ago that I did not have MS. Then when I saw him he said you most certainly do.

Says that I asked for an immune suppressant. It goes on and on making him look like a fool, and me looking like I was a maniac in his office. Unbelieveable. And why would he send a letter like that it an MRI center. All my MRI scans state MS Plaque, all my records read MS all over it with his signature attached. I am just dumbfounded.

I will definately be changing neuros, but I feel like I need the last word...how can he get away with this. Never mind what he has done to me psycologicially. Been on Avonex, Copaxone, Tysabri, plasmapheresis, IVIG and after that visit hands me a script for Cellcept.

What happend to "do no harm"?? If he doesn't think I have MS then he had no business handing me a script for Cellcept....which I stopped taking (only had a few doses)

I think he is being sued, watched or has gone crazy!!!

Wow...I am again speechless but can't wait to see if there are any changes to my MRI
Thanks for listening and chiming in
Happy turkey day to all
Linda

[Seasha]

My dear Linda~ keep us posted of the outcome of your MRI!!! What a mess

[jumpinjiminy]

Wow. Just wow. Maybe time to contact a lawyer and see about getting copies of the MRI center records, including his letter. At the very least, you need to get copies of all your records from his office, and get an amendment in there, and possibly in the MRI center's records.

When I had to collect my records, the only place that would give you a copy of an outside doc's communications had to come from that doc themselves. These seem to be the hardest to get your hands on, the communications between docs.

[foxz71]

Highly agree with jumpinjiminy; get copies of your records. You need to protect yourself in the event that you need to file suit. Remember the longer you wait to get those copies the longer they have to alter something and it does happen regardless that it is illegal.

Tell the MRI center that you would like copies of the MRI scans and report also that you plan to go to get a second opinion from a new Neuro. Most are accommodating.

[0485c10]

Yes it sounds like you need to get of all your medical records, medical records from this doc(which should have the letter he wrote & sent to the MRI center) and from the MS specialist that you saw in the past that supposedly confirmed you do not have MS.. Records have to come from their source so you won't find the MS Specialistr letter to this doc in his records, that will be in the MS specialist records.

jumpinjimmy said get an amendment into this doc records of your disagreement of what was said on in that appointment of 11/17

It does sound like some very powerful meds. From reading this post I am not certain what he said you had in his records?
He said no MS
You said you had CFS, according to his records, he didn't say it.
You said you had Fibro, he didn't say it according to his records...

from his records he doesn't diagnose anything but prescribes cellcept for nothing?

The Hippa law specifies that a patient can add an amendment to a file which you will need to have included when transferring records to a 2nd opinion doc.

Here is the link to the hippa law rights to correcting information..

the healthcare provider must amend the information if incorrect. if the provider does not agree to your request to amend the information, you have the right to submit a statement of disagreement that the provider must add to the record.

http://www.hhs.gov/ocr/privacy/hipaa...alrecords.html

[soccer3]

I know what a mess....
Thank you for letting me know about the amendment. I was wondering how i was going to send some kind of disagreement letter about the visit. I am just afraid if I pursue a malpractice suit it may affect my SSDI.

So i will wait for my MRI results....then cancel my follow up appt. send for a copy of my records of the last few visits (i don't think i was supposed to see that letter and I don't want to get the MRI dept in trouble), then send my amendment of his letter, then ask for all my records and go elsewhere if needed.


The other thing I don't understand is that why would he foolishly send a letter like that if I have more lesions show up on the MRI....what a mooron. He must have a crystal ball! My brain is fried to say the least!

[0485c10]

I am just afraid if I pursue a malpractice suit it may affect my SSDI.

Ask the ssdi layswer about ssdi and having your diasgnosis reversed. How long have you been on SSDI and how soon would you expect your CDR(continuing disability review)?. Its suppose to happen at 2,3,3 &7 years on disability. That would be the first times SSDI would have a reason to know your change of diagnosis(your still affected and SSDI understand different doc's disagree and allows time for that)...unless you are on LTD that may suspend payments. SS know when LTD stops paying for whatever reason and investigates that.

A lawsuit is many years away, your CDR will happen before that.

and they don't review your medical records unless you report a change on your CDR form.

[0485c10]

The prescription of medication when a diagnosis is not known, because a patient asked for the meds...well a doc just went to prison because micheal jackson asked for propofal..the court found the patient is not responsible for the meds they get even if they ask, the doc is responsible for what they prescribe.

[wrest53]

records

soccer3,

Sorry for your troubles. About the records:

1. The MRI center probably had the report of your last visit--the one that was sent to your primary or other physicians. Usually they will not give you that report, and are not obliged to. They have to give you their reports--not reports from other Physicians or facilities. That was a request for the radiologist to have some history for the MRI. You need to request that report from the Neuro or the Primary.

2. You can request all of your MRI, CT, X-Ray, EMG, any eye exams and Lab reports from the facility that you had them at. You may have to sign for them--but that should not be a problem. A lot of times--it is easier to get them from the facility than your doc.

3.You can request a copy of your records from the Neuro--be specific. Usually they will not copy your entire file--or they will charge you. Often it is a lot of records. What you need are all of the reports of your office visits--dating back to your initial diagnosis. I'd ask for Labs, inc.Spinal tap if you had one too. Labs sometimes are harder to get. Often times Labs send the work out, most of the reports now are automatically faxed, and they don't hire people to worry about records, since a machine takes care of them.

4. Your Primary is another avenue. Office visit reports should be sent to the physician that refered you. Labs and MRI are usually not sent to your primary, unless you request that a copy be sent.

5. This should be a good start a gathering--and from now on if you pick up the CD of your MRI and there is a report--copy it, if you have anything done--request a copy to be sent to your Primary.

When I applied for SSDI--I had all of my records--it was a big help filing on-line. I had all of the dates of procedures and the results. I copied them all and took them personally to the SS office with my birth certificate,which they copied. When you apply for SSDI, they will only request the last 3 months of reccords. But you will be able to provide a complete record.

Hope this helps, and good luck.
KW

[Creede]

I don't know what to do about it Soccer3, but I understand your frustration and "fear" of what is in those records!!!

I'm trying to get my records right now bc I need a new nuerologist, and I think there is now stuff that isn't true in them, but I am having trouble getting them to release them. Which is making it very difficult to get a new nuero in the town where I now live.

I, like you, am especially affraid bc I'm on disability as well...

Good Luck and Hang in there!!!

[gomer]

Medical records can be so wrong in some instances and informative in others.

Years before I was sent to a neuro (by new eye doc), I found my ENT had in his records a note "CNS issue, investigate, if warranted". That was based on a brain MRI with classic Dawson's fingers galore. The MRI had been done due to falls requiring surgery...wonder what he would consider "warranted"?

In another, more recent instance; I got records from my shoulder/knee surgeon. He had been a great doc in the past, but my last appt was not near right. He did NOT listen and was not the least interested in WHY I was there, and instead trying to justify a knee replacement on the leg other than what I was there about.....weird!

The report was loaded with FALSE info, like I had tried steroid injections on my (better) knee with no help. He did NOTHING for the bone tumor pain I was there about on the OTHER leg, but instead was creating a false paper-trail to SELL a new knee $$$$$$$$$$$$$, in other words MONEY, plain and simple.

WHY......... simple, he had a new stand-alone facility with his own P/T and all.


Gomer Follow the MONEY!

[soccer3]

another update on ms dx or not

I received the letter that my neuro wrote to the MRI center and my other drs. It is definately not the same letter. Not once did he mention that my husband was there and spoke of conflicting dx, he wrote my vital signs, and he never touched me, said that I and "focusing on the fact that all her symptoms are consistent with ms, spasticity,visual disturbance,fatigue, muscle weakness.

He never once mentioned that he told me that I did not have MS himself. He wrote "She is frustrated that she was treated for ms for many years and now was told she does not have this disease. She is frustrated that she is worsening and we do not have a dx. Excuse me You Mr. Neuro dx me 11 years ago and put me thru hell since then and has taken no responsiblility for it or has not offered any new plan other than cellcept which he claims "I" asked for and he wrote a script for.

This is the part that I really don't get he wrote, "She may have a form fruste of an autoimmune condition possibly presenting as, and i use the term loosely, "PPMS", CFS.

LOOSELY...that's a pretty serious claim to make. First you say i don't have MS now you say i may have the worst possible ms PPMS.... I have to write an amendment to this letter this is just too unbelieveable. How do I do this? Just write him a letter back and copy my other dr's ???? I still haven't received my mri results

[jumpinjiminy]

It sounds to me like he's leaving the door open for alternative autoimmune diagnoses that can present like PPMS and/or CFS. Apparently, he still believes it's autoimmune in nature or he wouldn't have suggested the CellCept. It doesn't matter if you asked for it or not, because he's still open to liability for writing an inappropriate prescription.

I can't give pointers on how to write an addendum because I've never done it. I just know that it's one of your rights to correct incorrect information in your file using the addendum process.

Also, they are allowed to hold back certain portions of your record if they choose, which it sounds like this particular piece of communication between him and the MRI center was held back. Maybe another one of your docs would let you see a copy. I have one doc that would let me read what other docs had written back in my file.

There was one neuro that basically wrote me off as a nutcase. My last visit with him was confrontational. When I requested a copy of my records to bring to another neuro's office, they left the report from the last visit out. I've not bothered to go back and request a copy of it. I'm not sure I want to see it.

But when I saw the neuro-ophth who found I had an RAPD and color-vision loss in one eye, I made sure he had a copy of it in my records to show he was way off base, and I was justified in seeking out treatment for the visual disturbances that he so easily wrote off as psychological.

I hope someone with some addendum experience comes along shortly to advise you. It might be as simple as requesting an addendum be added for each inaccuracy recorded in your chart, with the date of the visit, and possibly the signature of your husband as the witness to what transpired. This is a legal document, and must be included in your file.

[hope32]

I missed the back story so I'm really confused--sounds like maybe your neuro himself is confused!--but I'm sorry you're dealing with this and hope you get it straightened out and find a better dr soon.

[jumpinjiminy]

My last post wasn't very clear. I think you just write up corrections for the dates of visits with inaccuracies, and they have to add them to your records. It needs to be written and treated like a legal document. Your medical record is a legal document, and your doctor is treating it as such, as he should.