Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 11-25-2011, 01:04 PM #11
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Originally Posted by daylilyfan View Post
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. .
Thanks for responding all. Sorry about the delay, I got extremely busy.
daylilyfan, Suzy has been on medicare for little over a year now. It so happens that my cousin's wife's mother had gotten plenty of advice from an expert in medicare-SS issues and she called this person about Suzy's issue and that person then called me. She seemed very informed, said she will gather as much info from us, next week, before Dec 7 deadline and steer us to the best policy one can get at the best price from several insurance companies. Why I thought only AARP was the only alternative is beyond me.
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Old 11-25-2011, 01:10 PM #12
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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.
Thanks again Ballerina for that info. Very interesting that they are going to add a RSD expert to the staff. Our next stop maybe there.
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Old 11-25-2011, 01:22 PM #13
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Originally Posted by LIT LOVE View Post

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!


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.
Lit Love, we are now conversing with an expert who'll help us find that supplimental coverage before the 7th. I'll check out the "medically needy" in my state to see if there are other options for Suzy.

I've got a feeling something happened with Suzy's doctor because I've talked to other patients with different conditions and the doc seems to be trying to rid other patients as well. I have this feeling there is some sort of crackdown in Northern Va with doctors, and in hand the doctors are passing the stress to their patients regardless of their condition.
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Old 11-25-2011, 01:27 PM #14
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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
**
Liz, Suzy was treated by Dr. Chin, receiving both ketamine and lidocain infusions with no luck. Dr. Chin said Suzy was a very difficult case. I did ask to join the "FB that is for VA RSD patients" but have not gotten a response yet. Liz, what is MCV?
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Old 12-29-2011, 09:11 AM #15
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Just wanted to say Suzy does not qualify for supplimental coverage because she's not a retiree. However I was able to get her an Advantage Plan-Humana PPO plan. In my neck of the woods (NOVA) only Humana and Etna participate, I wanted BC/BS for her. Does anyone know who participates in Maryland?
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Old 12-29-2011, 07:13 PM #16
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Supplemental coverage is not just for those that are retired. You picked up the part B coverage, correct? The supplement is in addition to the part B. I carry it, and I'm on SSDI. There might be cutoff dates with this coverage as well.

I reread what you wrote, did you mean your state only offers medically needy Medicaid to those that are retired?

My brain isn't working very fast at the moment...
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Old 12-30-2011, 08:58 AM #17
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Supplemental coverage is not just for those that are retired. You picked up the part B coverage, correct? The supplement is in addition to the part B. I carry it, and I'm on SSDI. There might be cutoff dates with this coverage as well.

I reread what you wrote, did you mean your state only offers medically needy Medicaid to those that are retired?

My brain isn't working very fast at the moment...
LIT LOVE, Suzy has Medicare Part A, B and D. Again, I might be dropping the ball, I hope not. My understanding is those on SSDI under retirement age only qualify for advantage plans, not supplement plans. Of course when someone is receiving SSDI and reach that retirement age their status is changed from SSDI to regular Social Security retirement. LIT LOVE, are you sure you have a supplemental plan not a advantage plan? Humana did inform us this PPO plan helps in both Medicare part B and D.

What I meant was there where only two insurance companies participating in the Advantage Plan, Humana and Eitna in northern VA. Another words, to me, not much competition. I'm not sure these days if that is a good thing or bad.
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Old 12-30-2011, 09:30 AM #18
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Wow! America sounds confusing and complicated. I am gratefult o be in Canada, but we still do not have coverage for prescription meds or dental coverage. Health insurance companies are so complicated in themselves.
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Old 12-30-2011, 10:15 AM #19
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Wow! America sounds confusing and complicated. I am gratefult o be in Canada, but we still do not have coverage for prescription meds or dental coverage. Health insurance companies are so complicated in themselves.
Very confusing. The US pays full retail price for meds. I believe those prices are negotiated in Canada.
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Old 12-30-2011, 10:18 AM #20
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Why do you say that Ingrid? Health care is always cheaper and far better when there's less government involvement...
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