[Jimking]

As some of you may know, my wife Suzy has RSD, received her SSDI a little over a year ago. The issue we are having is replacing her current doctor who does not except medicare and does not want to treat her any longer after 4 years. The effort is turning into the same situation we had years back trying to find a doctor who really treats RSD.

She has now seen four doctors. Keep in mind, our belief is a patient should interview the doctor first before both parties agree to a doctor-patient relationship. Before any treatment or meds are prescribed. Another words we are employing the doctor, not the other way around. At least that is what we think we are doing.

In short order this has been the results from these 4 doctors. First doc will only prescribe Lyrica. Seconded Doctor who owns a slew of Pain management clinics from NJ to Virginia, promised Suzy on the phone that he would see her personally. He didn't, instead had a rookie doctor try to sell her a spinal stimulator, that's all, nothing else. Third doctor told her, without seeing her records or evaluating her, told her he did not think she had RSD because RSD does not spread.

Today was the 4th doctor. Bear with me,---A month ago Suzy's doctor required all her patients to take a urine test. The cost we were told would be $85. We where billed $595. Of course her test came out good. The nurse at the doctors today handed Suzy a cup to take a urine test in which she refused, stating that she is not a patient yet and that she is only here to talk to the doctor and if we both agree to treatment then I'll take the test. The nurse said no, take the test. She refused. And I don't blame her. What criminal behavior does she have to prove never took place when their is no commitment from either party. I think this kind of behavior should be outlawed. But that is my opinion in which I'm quite damn sure me and my wife are correct about.

My question is how many members to we have that are on SSDI and medicare, are having major issues finding a doc and having to urinate in a cup before interviewing the doctor? Also, this may be a state issue, do you have to see the doctor once a month in order to receive your medications? I've heard of some folks going to the docs every 3 months and having their meds mailed.

Also, what I'm finding out is how limited medicare is to those on disability, not to those who are retired and on medicare, there is a difference. I'll first say I do not have group insurance from work, they do not provide it. I have independent insurance which my wife will never be able to use. My understanding is those disabled and on medicare are not qualified to choose supplemental insurance through medicare, only retirees are, is this true? I was told it was through medicare and perhaps AARP also. If so, what other recourse is there? The only add-on that I pay for is Medicare Part-D Drug Enhancement Plan, which allows Suzy to choose name brand drugs instead of being forced to take generics that clearly don't work. Other than that there seems to be a huge void in options.
Sorry for the long post.

jim

[alt1268]

Jim,
first I want to say I am sorry your having such a time.
second, suzy is absouletly correct in the fact she should not have to take a urine test when first meeting a doctor. A doctor works for you, not the other way around.
my doctor is out of Maryland, although he does stimulator's and lsb. He has been very patient and supportive with me. I also saw there is a ketamine dr. out of DC.
I know I agreed to be randomly urine tested with my doctor, but after a year and half, I have never had one. I use the same pharmacy and have no problems with refills, (except pharmacy error's)

[Jimking]

Originally Posted by alt1268

Jim,
first I want to say I am sorry your having such a time.
second, suzy is absouletly correct in the fact she should not have to take a urine test when first meeting a doctor. A doctor works for you, not the other way around.
my doctor is out of Maryland, although he does stimulator's and lsb. He has been very patient and supportive with me. I also saw there is a ketamine dr. out of DC.
I know I agreed to be randomly urine tested with my doctor, but after a year and half, I have never had one. I use the same pharmacy and have no problems with refills, (except pharmacy error's)

Thanks for the response alt. Suzy's doctor has stated that she can no longer help her. She's run out of ideas. Suzy's been through most treatments and infusions etc. the past 10 years. She's also in her 50s. A stimulator will always be out of the picture for her. We are convinced stimulators are too risky on multi limb, upper and lower RSD. I have a hunch Maryland may have better treatment for those in her condition than Va with its medical cartel mentality. Lets face it, Maryland has been innovative in medical treatment for decades. Va? In-NOVA hospitals---bla

[LIT LOVE]

I pay for part B ($100) and have Supplemental Insurance that runs me another $300 per month with SSDI. AARP only offers it for retired SS beneficiaries, but there are lots of other insurance companies. Some states cover these deductibles if she qualifies for "medically needy" Medicaid. Rates raise if you wait to pick up the extra coverage...

Urine tests are standard with pain docs. I've never failed one, but I'm still expected to have one WHENEVER my doc's offices asks. My insurance covers it, so I don't have your financial concerns though.

Docs have major liability issues with patients like us and many pain patients do doc shop, so I am empathetic to why they require patients to do this. I Actually like the fact that I have a long standing record that shows I've always been compliant.

I'd consider looking at primary care docs with a few severe pain patients, the pain clinic docs can be cynical and spread in IMO...

[ballerina]

Originally Posted by Jimking

Thanks for the response alt. Suzy's doctor has stated that she can no longer help her. She's run out of ideas. Suzy's been through most treatments and infusions etc. the past 10 years. She's also in her 50s. A stimulator will always be out of the picture for her. We are convinced stimulators are too risky on multi limb, upper and lower RSD. I have a hunch Maryland may have better treatment for those in her condition than Va with its medical cartel mentality. Lets face it, Maryland has been innovative in medical treatment for decades. Va? In-NOVA hospitals---bla

Given the fact that Suzy has tried so many treatments and drugs you might want to look into pain clinics or pm doctors who have experience with CRPS. Primary care physicians are unlikely to even be familiar with some of the CRPS treatments Suzy has had and you may be in a position of educating the doctor.

Finding a pm with CRPS experience, particularly well versed in some of the more cutting edge treatments may give Suzy some new options.

Please see the pm I sent to you and Suzy and best of luck in your search. Being the tireless advocate that you are I know you won't stop until you find a doctor who is a good fit.

[Jimking]

LIT LOVE, Suzy has taken many urine tests with her doctors. Not an issue, its the issue of only interviewing a doctor that a test is required that we both have an issue with. Never met the doctor, never spoke to him, never treated by him. Once treatment started a urine test would be appropriate but not before.

Suzy would not qualify for medicaid because I earn too much and have too many assets. Lit Love you mentioned supplemental coverage outside of AARP, can you explain further? I think I may have dropped the ball with this one "Part B". Could it be that she can pick up medicare Supplemental insurance through another source? If so what advantages do you have with it? Thanks Lit love for the response.

[Jimking]

One other thing I'm confused about with medicare and supplemental coverage is if a doctor refuses medicare would they refuse a supplement from lets say BlueCross BlueShield?

[daylilyfan]

In my county, they have a county government office that deals with Aging. I went there and a woman who helps seniors with supplemental insurance and medicare talked to me about what to do when I get Medicare in July 2011. She told me I had to wait until I was on Medicare to sign up for supplemental. But, I think she also said you had to sign up within a certain time frame, or you would not be eligible. I am not sure on that - but I know she told me to come see her as soon as the Medicare kicked in so she could help me pick a provider and get signed up.

So you may want to check into this ASAP.

The different supplementals cover different medications at different rates. So you will want to see which one would be the least expensive according to what medications your wife takes. At least that is what this woman told me.

See if your county has an aging office. She knew about SSDI, SSI, etc as well as for retired people.

If the doctor does not take Medicare, perhaps they would take the supplemental.
_____________________________
I also went to a "pain management" doc who insisted I do a drug test, $400 before he would talk to me. I walked out. They stopped me in the lobby and said he would talk to me after all. I found out all he was doing was pushing SCS too. Told me he has lots of experience - does a couple every morning. He also said that SCS is the only cure known for RSD. (What?? That is plain wrong!) Some of the things he told me about the SCS were way off - like I could get mine implanted, recover there in the surgery center, then drive myself 3 hours home. I knew from reading on this board that your not supposed to drive for quite a while after the surgery. I practically ran out of there after that.

[LIT LOVE]

She might have to wait till Jan 1 to add Part B, but have her call right away.

Explore her Medigap options at Medicare.gov but do so right away since I just received a postcard stating Dec 7 is the last day for open enrollment.

Medicaid rules vary by state for SSDI beneficiaries. Income and asset rules are some times excluded for this one group. Research "medically needy" Medicaid in your state!

Obviously she'll want a doc with significant RSD experience. Mine is listed by Medicare as a Primary Care, by WC as a Primary Treating, but much of his practice is dedicated to severe chronic pain patients. He has around 6-10 RSD patients at any given time, and he's treated over 100 during his career, but he does not have a pain clinic--a good thing IMO. Everyone has their own preferences.

Being dropped by your doc has to be traumatic for an RSD patient. With the kind of meds we're on, switching docs and even pharmacies, can present major challenges. My doc has made a long term commitment to my care, that I truly appreciate.

[betsykk]

Jim,
We are in southeastern Va and I don't seem to have the same issues as you do up there. As I have said before we see Dr Chin at GW for ketamine infusions and have recently added Dr Schwartzman in Pa to our list.
There is a group on FB that is for VA RSD patients. You might want to go on there and ask them for doctors that are helping them.
Please feel free to email me if you have any questions. I know there are a few good doctors at MCV as well.
Liz
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