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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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06-23-2014, 02:20 PM | #1 | ||
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Junior Member
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I currently live in Florida near Jacksonville and want to relocate to some area in southern Virginia. I want to be somewhere between my daughter in Manassas Va and my son in Raleigh NC.
I was diagnosed with MG by a positive antibody test about two years ago after developing double vision and tunnel vision. Prednisone cleared up the DB but made other symptoms worse. I started on 80 MG a day, now down to 15. I do IVIG once a month. I am looking for a place near medical facilities where IVIG is provided. I only see my Neuro about every 4 months so I could travel back to jax for him but would want to eventually get a new neuro. I prefer a rural area but close to facilities with senior citizen activities available. I am 70. Does anyone from that general area have any input. I am on a limited income and want an inexpensive place. |
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06-24-2014, 04:37 PM | #2 | ||
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Sorry that I don't know that area = = but hope someone else does. Good luck to you!
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06-25-2014, 11:38 AM | #3 | |||
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I notice that you are 70, so you should be on Medicare which pays for IVIG under Part B and you have a 20% co-pay. If you have supplemental insurance, the will pay the 20% and you pay zero. I don't know your financial situation, but if at all possible, my recommendation is that you try to have supplemental insurance so you don't have to worry about the cost of your treatment.
As far as IVIG in southern VA, if you do a search under Google, you should be able to locate an infusion center. All infusion centers do IVIG because it is used for many other types of illnesses than just mg. I was traveling in central VA last year and found an infusion center about a mile from sister's house and had no problems because I made the appointment before I even left home and had my doctor fax the orders directly to the infusion center. Good luck! |
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06-25-2014, 02:08 PM | #4 | ||
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Thanks, I do have medicare and supplemental plan f so all is covered. I was concerned about the housing costs and such. Thanks again for the reply. |
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06-27-2014, 10:58 PM | #5 | ||
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I am from the area. My husband has Myasthenia Gravis and is seen routinely by Neurologists at VCU Health System *edit* and they have wonderful care!!! His Infusions are done there as well. It would be a bit of a drive from you from South Hill, however, they have a hospitality house where your nurse can arrange for you to come to town, check in at the hospitality house, have your infusion, stay the night (they ask for a very minimal donation if you have it but it is not expected) and go home the next day.
There are also alot of VCU physicians all over the state of Va, from Fredericksburg, to South Hill. Finding a qualified Physician should not be hard at all! And you are more likely now, to find one closer to your home and only have to travel for your IVIG infusions. I also work for VCU so this is how I know all this information. I wish you the best and good luck with your decision on where to move and whom to connect with medically!!! Last edited by Jomar; 06-27-2014 at 11:45 PM. Reason: no links or partial links for new members |
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06-28-2014, 08:52 AM | #6 | |||
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Thanks! Nanc |
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06-28-2014, 05:30 PM | #7 | ||
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I know this is off topic, but hope someone will help. Please forgive this intrusion.... I was just diagnosed 5/4/14, and YIKES! I don't have basic Medicare with supplemental plan f. Instead, I have AARP Medicare Complete Plan 1 (HMO), along with medicare part b. May need IVIG in near future. Yikes again!! Is basic Medicare with supplemental plan f the preferred insurance for MGers? I have no other serious health issues (MG is enough to worry about!).
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06-30-2014, 03:30 PM | #8 | ||
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Just a couple of warnings. Dont do in home IVIG. Medicare considers the medicine to be part of the treatment in a hospital or infusion center but part of the medicine covered by your drug policy if done in home. Doesnt make sense but my initial 5 treatment week would have cost over 1000 dollars with my drug plan copays in home. If you do go to an emergency room don't let them keep you overnight for observation. Insist on being admitted. If you were to go into crisis, was kept overnight for observation, than it was determined you needed a short time in a rehab facility it could affect your coverage by medicare. Medicare will only cover rehab after so many days in the hospital. I read where one patient was 'surprised' with a 30 thousand dollar bill because part of his hospital stay was considered 'for observation;' I have also read where some of our congress people are trying to get the rules changed so observation is considered the same as admitted but be aware. |
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06-30-2014, 04:23 PM | #9 | ||
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Edwin, Thanks a lot for this important information. I have the insurance noted in my previous post, and Medicaid as well. Was never sick before, so really never learned much about insurance. Today I researched companies offering part f (Medigap) policies in my state. Spoke to a rep at one of these companies and was told that I probably would not be accepted into any Medigap plans due to my diagnosis. Do you know if that is true? Obviously I have a lot to learn about this matter. Best Wishes, patrick123
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06-30-2014, 07:17 PM | #10 | ||
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