New Neuro.....

[mrsmachine]

Hi there I must apologize in advance, because this is a long one.

I have been seeing a Neuro since August 2008. I originally went to him as a second opinion on an MS diagnosis, then just kept on seeing him because he said and did all the right things. Here is my problem...

I recently obtained a copy of all of my office notes from all of my visits, and was shocked to see what he had written. Long story that I will make as short as I can.....the first 6 visits with him were well documented and he listed all of my symptoms one each report. (He also listed that he had copies of old medical records, which symptoms are all documented back to Jan 2007) On my medical records from his office, he listed the following diagnosis and symptoms: MS, optic neuropathy probable right eye, central vertigo (all other causes of vertigo were ruled out), MS related fatigue, pain, generalized weakness, ataxia, abnormal gait, cognitive difficulties, urinary hesitancy, urinary frequency, and more. In the 2nd visit with him, he even discussed Tysabri treatment with me, that I could receive in his office, as he was a Tysabri infusion center. Now, if he wasn't very sure that I had MS, he sure would not have been discussing Tysabri infusions with me.

Somewhere unbeknownst to me, and is reflected in the subsequent office visits, is like he totally forgot what he had previously written about me, like he did not refer to the previous visits notes before seeing me on a current visit. It was like he suddenly had no information about me, or any previous office notes from earlier visits. I refer to it as being in the Twilight Zone, because I was in utter shock.

My records after those initial 6 visits have inconsistency after inconsistency and even said he felt that I had probable MS. For instance, he said before that I had debilitating MS related fatigue, and then on the most recent visit stated that I said I am in bed all day due to the fatigue, but yet my exam was remarkable normal, and at that visit, he did no exam on me, only spoke with me. On most recent visit with him, I brought him an updated office visit with my Ophthalmologist, which originally diagnosed my Optic Neuritis, and he discarded the copy and threw it in the garbage, saying he did not think that I had Optic Neuritis, but yet, he is not an Ophthalmologist, and he had never examined my eyes. He totally contradicted everything he had previously written. I was just stunned!

Of course, at that last visit with him, he did not know I had obtained copies of my records, and I very nicely asked him why he had said on my first dozen visits that I had MS and all of these other symptoms and why he was contradicting everything that he previously said. He was extremely pissed off that I had the nerve to even suggest such a thing. I wanted to run as fast as I could from his office and obviously will not be going back.

Right away, I made an appointment to see another MS specialist. Which brings me to my problem. When I go to the new Neurologist, do I tell them what all transpired with my previous Neuro?? Or do I just show them the records for the first 6 visits, keep out the records from the Twilight Zone, which cover the whole last year, and keep my mouth shut??

My second problem, I am also worried because I am on Social Security Disability, and know that they review all of their cases every so often. If they went by those records, SS would think I am not disabled, which is definitely NOT the case. When Social Security reviews their cases, will I get a letter from them to let them know what Drs. I have seen over the past 3 yrs, so they can get new and updated records, or do they just automatically request records from the Drs. they had on file from when I first applied for disability. The reason I want to know is because I do not want SS to have any records from that Neuro. I do not know what I will do if they take away my disability, and am very worried because it was hard enough to get it to begin with.

I hope I was not too confusing about how things "went down". I try not to worry too much about the small stuff, but this whole situation is about to drive me crazy!!!

I did learn one valuable lesson from this whole thing, and will make sure that I routinely get copies of all medical records from time to time.

Thanks in advance for any advice you can give!!

[GEM]

Wow, you have to wonder about what happened to your old neurologist for him to act in such an unprofessional manner? Your new neuro will ask why you decided to change doctors and about the gap in the records, so you will have to give him some sort of explaination. Be honest, but don't go into every bloody detail. About what you did here should be enough. Explain why you took the step of getting a copy of your medical records, that it was extraordinary. Make sure you have a copy of your ophthomologist's report, too.

I don't know what to say about the Social Security question. Your old neuro would have to explain to them why he changed his mind, too, and by that time, you'll have your new neuro's records to refute him.

[Cindarelly]

It's my understanding that SS usually never goes back to the dr during a review.
Take your records in your hands with you to your new dr's appt.
Underline any testing and why it does not fit.
Don't spend a lot of time on it.. Just point out your confusion and how well he documented at first... then how he became "confusing" later and contradicted what he would say to you .. or whatever would be proper..
Then move on to something more positive...
Like I need to be a part of my "team" something to that effect.
Since I think Dr's are next to evil and have had some of the worst.. think hard on my advice.. basically I think they are all walking idiots in white coats .......that possibly belong behind the walls instead of on the outside.. Let me rephrase.
They are very smart, and it works against them!

[0485c10]

Wow, so many problems and all so solvable because of what you did.

1. how long have you been on ss disability? is it ssdi because if it is i can describe the cdr process, the continuing disability form they send at 3 yeares, 3 years then every 7 years after until a person reaches retirement age...but that's more typing then i have time for right now. its rare that SS does a full reviews of disability unless something like job earning surface, a person picks up a part time job or one woman had a full blown review when her long term disability stopped paying--she was only getting a small amount from ltd and they required like 6 month verification from the doc that she was still disabled. it irritated her & the doc so she just let it go because it was not that much. her ltd stopping kicked off a full blown SS disability review--but unless something like that happens ss reviewing doc records is rare to the point of not being likely.

2. Medical records are legal documents and cannot be altered but the Hippa law gives you the right to make a request to have the records be amended.

Correcting information
If you think the information in your medical or billing record is incorrect, you can request that the health care provider or health plan amend the record. The health care provider or health plan must respond to your request. If it created the information, it must amend the information if it is inaccurate or incomplete. If the provider or plan does not agree to your request, you have the right to submit a statement of disagreement that the provider or plan must add to your record.For further information on this topic, please refer to 45 C.F.R. §§ 164.508, 164.524 and 164.526, and OCR’s Frequently Asked Questions.


3. Regarding your transfer of records to your new neuro--i kind of agree with Cindarelly and verbally explain to the new neuro what happened. Perhaps you can get your file amended before you transfer it to the new neuro.


doc's are trained to make their own conclusions when they treat a patient not just accept a prior diagnosis. the first visit cost is higher because the doc reviews the lab test & stuff to determine if he agrees with the diagnosis. i'm not sure that what your neuro wrote in later vists will matter. was your mri consistent with MS?

[0485c10]

the government website where i got the information about hippa and the right to make an amendment to the record...

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

and check the page before that gives more information about hippa rights...

http://www.hhs.gov/ocr/privacy/hipaa...ers/index.html

[mrsmachine]

doc's are trained to make their own conclusions when they treat a patient not just accept a prior diagnosis. the first visit cost is higher because the doc reviews the lab test & stuff to determine if he agrees with the diagnosis. i'm not sure that what your neuro wrote in later vists will matter. was your mri consistent with MS?

Thanks for your information and input. I have been on SS disability, not SSI, since May 08, and would possibly be up for a review in November of this year.

Because, I have had terrible experiences with previous Neuros, I originally went to that Neuro for a second opinion to finally get a diagnosis for MS.

This particular Neuro diagnosed me with MS, due to CSF results, I had >5 O bands, elevated iGG, and elevated protein levels that we only present in the CSF and not in the blood serum. He also based his diagnosis, on the fact that I have had ON in the right eye, also, due to symptoms, relapses, an abnormal EVP of the lower extremities, and one MRI which showed spots in the white matter, consistant with MS.

I know medical records cannot be altered, but I that Neuro was already extremely pissed when I questioned him about things he had said in prior visits. Like I said before, he stated that he never said any of that stuff. If I go there and bring out the copies of those records, and say well here it is, I am afraid he will go back and say he made a mistake on those and amend all of them, and then I will have nothing.

I figure I will not say anything, and then at least I have the first dozen office records which are actually accurate.

So, you are saying there has to be a reason as to why they review disability, like work credits showing up, and that they routinely do not do it?
BTW, my disability was given to me, NOT because of MS, but because of my inability to read and see close-up, (no close up acuity) due to double vision in my eyes and Optic Neuritis secondary to MS. This is something that is not very likely to improve and will only get worse as time goes on.

Thanks again for all of your help in this.

[0485c10]

Thanks for your information and input. I have been on SS disability, not SSI, since May 08, and would possibly be up for a review in November of this year.

Because, I have had terrible experiences with previous Neuros, I originally went to that Neuro for a second opinion to finally get a diagnosis for MS.


I am afraid he will go back and say he made a mistake on those and amend all of them, and then I will have nothing.

I figure I will not say anything, and then at least I have the first dozen office records which are actually accurate.

So, you are saying there has to be a reason as to why they review disability, like work credits showing up, and that they routinely do not do it?
BTW, my disability was given to me, NOT because of MS, but because of my inability to read and see close-up, (no close up acuity) due to double vision in my eyes and Optic Neuritis secondary to MS. This is something that is not very likely to improve and will only get worse as time goes on.

internet communication is so difficult---when 2 people are trying to understand each other??

i'm afraid i have mispoken about SS reviews because my experience has only been with SSDI and MS as a cause of disability.

I learned everything i could about my situation and spoke to others that were in the same situations--we had no change in our health status, medical records were never reviewed. but now i look down at history you have listed and its different from what i experienced, so i better not predict what will happen in your situation.

I'm sorry about that, the SS disability review stressed me out so much & then when it was over, it was very anti climatic, i laughed at how stressed i had been about it. (now i have gone through 2 already and expect my third in a f6 more years)---

when i read a post about someone else stressing about a SS disability review, i just want to reduce their anxiety, but i have not been in your situation so perhaps i can't for you. I'm sorry about that, i truly am. And I'm sorry about a false expectation i may have caused in you.

what i can do is tell you what i experienced and point out where i see your situation differs so it might be handled differently by SS..??? I don't know.

i'm on SSDI, i needed to meet both financial and disability requirements to be approved for SSDI. i needed to have 20 credits paid into SS through my work. I got medicare 2 years after i was awarded SSDI.

I can't tell if your on SSDI or SSID? SSID is the need based disability and a person is approved for mecicaid right away with no wait on SSID. SSID might be handled different than SSDI?

i was awarded disability because of MS. I read that every reason a SS disability is given has a specific review cycle & the ms review cycle is 3 years, 3 years then every 7 years after that. i have done 2 so far and i hope the third is in 7 more years. but i will have to wait and see? i received my first at 3 years then 3 years and i hope the next one is in 7 years. the cycle begins at the date they assign that your disability began DOD(Date of Disability), not the date you started receiving SS checks the date your disability was assigned. My DOD was 8/2004. I received my first CDR (continuing disability form) on 8/2007 then the next on on 8/2010. i should receive my third on on 8/2017


as your description points out you were not awarded disability because of MS, so I don't know how often you will receive a CDR form? i'm sorry that i implied that i did know i thought i did, i thought we had the same situation but i was wrong, we differ on the reason for disability & you will have a health change, i stayed the same with just MS

on 8/2007 i received a single page double sided sheet with 6 question on it. It was titled the Continuing Disability Report CDR. In 2010 it was called the Disability Update Report ...but it was the same questions just a different title.

it came with an instruction sheet that i was to fill out the form and mail it back within 30 days...

Question 1...Since your last report have you worked for someone? check box yes or no.
if yes please complete the dates started & ended and monthly earnings.

I think a Yes here might cause a SS disability review but i don't know because i haven't ever said YES.

Question 2...Have you attended any school or work training program(s) since your last report. ? check YES or NO

Question 3. Since you last report to the present check which applies.
My doctor & I have not discussed whether I can work OR
My doctor told me I cannot work OR
My doctor told me I can work.

Question 4.. Place an X in one box that best describes your health..
Better OR
Same OR
Worse

i have not had any changes in my health condition, i always mark the same. you will mark worse because of the ms diagnosis you got after disability was awarded, so i don't know if they will ask for a copy of your records?

5a. Have you gone to a doctor or clinic for treatment(including evaluations, check ups,counseling,prerscription or medicine) since your last review?.

b.if you answered "yes" please list..
most recent visit, reason for visit, month/Year
ect.
oldest visit, reason, month year.

6a Have you been hospitalized or had surgery since your last review?

b. if you answered YES to question 6a please list.
Most recent, reason, month/Year.

REMARKS: IF you use this space to furthur answer questions 1 through 6 place an X in the box and print on the lines below.

SIGN & DATE;



About a month after I sent it back, i got a letter from SS that said at this time we do not need to review your case, but we will contact you in the future if we do have a need to review your case. thank you.

i don't know how much it will differ because your not on disability because of MS? or if you are on SSDI or SSID and it differs between the two, i don't know that. and if the change to your health status with the addition of an MS diagnosis will make a difference? Just don't panic when you get your first CDR form in the mail from SS, everyone on disability gets one and has 30 days to return it.

[mrsmachine]

To: 0485c10
quote "when i read a post about someone else stressing about a SS disability review, i just want to reduce their anxiety, but i have not been in your situation so perhaps i can't for you. I'm sorry about that, i truly am. And I'm sorry about a false expectation i may have caused in you."

No, no, please do not be sorry!!!!!! It is very hard to communicate exactly what I am trying to say, via the internet, when there is no way to list everything I want to say in 2 sentences, plus add frustration, and cog fog, I am surprised that anyone can understand what I am saying!!!!


Thank you so much for giving me your experience with this. That is my whole reason for writing in, because I figured there had to be others with MS, who may have had the same problem. I wanted to hear about what happened to others, and would not automatically assume that the exact same thing would happen to me.

I ordinarily would not have even thought twice, or worried about it to begin with, except for what happened with 2 yrs of medical records with my old Neuro.

Thank you for listing the questions that were on your review form, because reading that made it seem "not so bad"!!

[Shashi]

Kim, I'm sorry you're having to go through this. Doctors just drive me crazy! I'm still waiting on a call back from my doctor who I called on Monday to report seizure episodes and numbness in my hand. (I bet if it were her hand that was numb and if she were having seizures, she'd be doing everything she could to find out why!)

I hope you get a good doctor who won't be backtracking on what he/she says. And getting a copy of your medical records is a very wise things to do!

Hugs,

Lisa

(I'm at work and don't have access to my e-mail, so I decided to just reply to your post here.)