new neuro appointment created anxiety

[goddessmoon]

I recently moved to a new area and had an appointment yesterday with the local neurologist. I had previously seen a neuro for 14 years; who I absolutely adored. So was feeling a little apprehension in seeing someone new. I was diagnosed in 1994 with relapsing/remitting. I have had a few really bad flares through that time with the last one in April 2010. I went on disability in 1999 because of the pseudo-flares happening several times a month; it became harder and harder to work full-time. I have lost most of my vision in the left eye in 1996 due to optic neuritis. And at times walking is a bit difficult. Of course, the never ending fatigue is always an issue.

I have chosen to not do any of the DMD's. My decision and I stand firm on that choice. My previous neurologist respected that. Not to say he wouldn't bring it up each time I saw him; but would do it with a smile knowing what my answer would be. I have yearly MRI's of which I went 6 years with no new plaques or progression.

At yesterday's appointment, I knew this would be a topic of discussion. And it certainly was. The doc asked me repeatedly why I wasn't on any of the protocols. He then made a statement which I found quite bothersome and need to know if anyone else has had this. Or even if anyone can tell me if it's true. He stated that because I wasn't doing any of the meds; I was in jeopardy of losing my Social Security disability if they were to review my case. He said he has 3 patients that this has happened to.

I know many physicians get kick backs from the drug companies for prescribing certain medications. I almost felt like this was an unjustified threat. Needless to say, I am going to research this and call my previous neuro to get his opinion.

[jazzgirl]

I've never heard anything like that, and he should be ashamed of himself for even suggesting such a thing.

The main reason for you to NOT get your SSDI is that you are no longer NOT able to work at any job...period.

[candycane]

"because I wasn't doing any of the meds; I was in jeopardy of losing my Social Securi

"...because I wasn't doing any of the meds; I was in jeopardy of losing my Social Security disability if they were to review my case."

I find this statement intriguing. I've never heard this before & wonder how that can be true.

I do hope you investigate & report back.

[jazzgirl]

It's not true! All the Social Security administration cares about is whether or not you can work (at any job). They don't ask about your medications...

[0485c10]

No that is not true...the government cannot dictate which treatment a person chooses..if any. my mom did the same thing to me at first when i refused meds for the first 8 months...i was gonna lose SS...no.

but the government can refuse to allow you to use their roads while your medical condition is not being treated. I refused a med for that 8 months, my dl came up for renewal. I was visibly unsteady. the dmv refused to renew my drivers licence without a doc signature, the doc refused to sign their form unless I started a med so in that case, because I wanted to maintain the right to drive the government was able to force me to use a dmd...but if i did not want to use their roads to drive on the goverment could not have forced me to start a med.

and also just like you have a right to fire the doc and get a new one if you find a doc lacking, the doc has a right to fire the patient and instruct the patient to get a new doc as long as its not an acute life threatening situation.

I refused a med and wanted to go on ldn. when i specified that the treatment i wanted to pursure was ldn---he said fine, find another doctor, i will not treat you if you are not following my treatment advise. Makes sense, why treat a patient who does not agree with your recommendations.

long story short i said fine. found an alternative med doc to prescribe ldn. my dl came up for renewal. i was very unsteady. the dmv required a MD licensed by the state to sign their form for me to keep my driving privlidges. the alternative med doc wasn't. had to go back to the doc who told me to find another doc. he would not sign the form unless i started a dmd as he had advised. a year later i wasn't so unsteady, now i'm a firm believer in conventional treatment for ms and think about how close i had come to losing my right to drive prematurely. i was going down hill before i started the med he had advised.

the right to use the roads could force a person into using a dmd--ms is unpredictable so the gov could refuse the right of the roads for an untreated unpredictable disease.. but for SS all the doc can do is confirm or deny ms, which is listed as a disabling condition by SS. and then say you are consistently able to work.. that would cause you to lose you SS and cause a lawsuit for him.

so your SS is safe. you might want to find a different doc who agrees with your philosophy. from my experence make it state licensed too.

[MrsBones]

I'm going to make a guess here. I'm not a lawyer, so it is just that, my guess. I can tell you that when I applied, my lawyer said to see all my usual doctors and take any treatments they suggested, so that I showed I was treating as much as possible in an effort to not be disabled.

SSA can and does request info on your meds as part of the medical records they require as evidence of your disability.
http://www.ssa.gov/disability/profes...videntiary.htm

Part of what they're looking for is your response to medications. If you have a condition that can be managed, in their opinion (obviously, not mine) you may not be what they consider disabled. On the other hand, if you try and fail treatment, it can re-enforce your disability by showing you have a chronic and progressive disease that doesn't respond to treatment.

I can see where a review could get sticky. Especially if this new neuro says in any statements he may provide that you have no disease progression over 6 years, possibly manageable symptoms and what he may see as refusal of treatment. SSA could wonder how bad your disability could be if you aren't treating it w/o a ( again, their opinion, not mine!) good reason. The dr could state that you could have more ability if you do X,Y or Z, whether or not it's actually true. If that's his medical opinion, he can give it.

I went on disability in 1999 because of the pseudo-flares happening several times a month; it became harder and harder to work full-time. I have lost most of my vision in the left eye in 1996 due to optic neuritis. And at times walking is a bit difficult. Of course, the never ending fatigue is always an issue.

I have yearly MRI's of which I went 6 years with no new plaques or progression.

I don't know that what your new dr said is true...I have heard of it happening, but don't know it did. I do know people who have been denied benefits in the first place with similar circumstances to yours.

If it's truly troubling to you, maybe you should consult with a lawyer. Your old dr may have given good reasons for you to not use a DMD in any statements he might have made to SSA, but you don't know if that's the case with this dr. He's already said he has 3 patients who have lost benefits because they don't use a DMD. Whether this was a scare tactic or the truth ( if that's the case, what he's put in their records and statements to SSA were a factor in that) or what his motives were for telling you this, it makes you question him.

Ultimately, it is your choice to medicate or not, you know the medical repercussions of that. You might need a disability lawyer to tell you what the legal repercussions might be.

[0485c10]

You know i agree with Mrs. Bones. it could happen under the right circumstances & it could become a very expensive case defining legal precidence. ultimately SS is a very political program,,depending upon thew politics occurin at the time it can be very difficult to be awarded SSDI or if the politics are another way it can be very easy to get on SSDI...SS is a very poliytical progranm which could result in lengthy legal arguments to determine each individual case because it is defined so vaugly just for this reason to make it flexible over time.

in 2008 they made an ammendment to the disability law--i'm sure there would be legal arguments to enforce.

HR 3195

http://www.govtrack.us/congress/bill...95&tab=summary


Sets forth rules of construction regarding the definition of "disability," including that: (1) such term shall be construed in favor of broad coverage of individuals under the Act; (2) an impairment that substantially limits one major life activity need not limit other major life activities in order to be a disability; (3) an impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active; and (4) the determination of whether an impairment substantially limits a major life activity shall be made without regard to the ameliorative effects of specified mitigating measures.

its arguable to the point of requiring a trial.

whether a person has to use meds or not is arguable in a court of law--as many people are essentially "blind" without glasses, but can see well enough for employment with their glassed, does that make them disabled?

my mom worked with a woman who had diabetes(young preson). when she wanted some time off work, she just would skip her shots for a few days. pass out at work get some time off work resume her shots do what she wanted to do with her extra days off & go back to work when her sick time was over. (we all understand the long term health consequence of what she was doing, but she was in quite a bit of denial about her diabetes and just thought her disease was something she could use to get days off) was she disabled to the point of SSDI yet?

this stuff is all arguable in a court of law, to say it is one way or another is wrong & SS is a political processs. Who know some politician could make a global statement that all untreated diseases are not eligible for SSDI without a medical reason that treatment is not being used. Then reduce the medicare cost to the gov that way.

[Redwings]

Hi goddessmoon:
I agree that you should get legal advice about this. Years ago I was briefly involved in a case of a person who could have "regained ability" if she had a relatively simple surgery to correct a disability. She chose not to have the surgery and go on disability instead. The ruling at the time was that SSA couldn't force a person to do something against their will to become "abled" and could be put on disability if they otherwise qualified. Since DMDs aren't curative, it doesn't seem like SSA would expect a DMD to remedy your disability, especially after 12 years. But it will take legal advice for you to see what applies to you.

What stands out as odd is that your new neuro said this happened to 3 of his patients when it isn't common. I'm with MrsBones on this -- it brings up the suspicion that, if true, HE might have had something to do with those people losing their benefits, perhaps in the way he filled out their paperwork and/or described their condition/disability. There's no way to interpret that as a good thing.

I don't know about you, but I'm hearing alarm bells that are screaming for you to get away from this neuro as fast as you can. Do not pass Go, do not collect $200!

You can't do anything about the claim filed with your medical insurance, but you can limit the potential damage that might come from having seen him. Get a copy of your medical record for that visit for your own information and defense. Then cut all ties. Never go to him again, never mention to anyone that you ever saw him, never again request or produce the medical record. If he prescribed any symptom-relief meds, don't fill the Rx. In your position, I wouldn't give this doctor any chance of giving an opinion about you to anyone. As Monty Python said in Holy Grail, "Run away!"

[goddessmoon]

neuro/anxiety

Thank you, everyone, for all of your responses. Lots to think about for sure. I am doing some research and investigation into this. I have a call into my former neurologist to ask his opinion. Unfortunately, the one I saw yesterday is the only game in town. I feel I need to have someone nearby in case of emergency, it's a 500 mile drive to see my long-time doc.

I have to laugh. The doc had just asked me if I have anxiety issues because I take Xanax. I said yes, I live with a chronic illness. And now he truly has created anxiety!!