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Old 12-28-2009, 07:57 PM #8
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cyclelops cyclelops is offline
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cyclelops cyclelops is offline
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Join Date: May 2007
Posts: 2,049
15 yr Member
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I can't blame you for changing doctors. That was the only way I got diagnosed. It is also frustrating to be treated poorly. Since you are not taking the meds, it is not an issue. I would make sure she did not document her 'impressions'. Stuff written in medical records comes around to bite us in the backside at times.

ADA is worthless. I pursued a termination that occured when I informed my employer I needed IVIG. I had not ever had one blemish on my record. I got nowhere, as in our state, employers can do as they will. That employer was self insured, and IVIG is currently $7800 per month. I was perceived as a worker's comp risk, a potential ligation risk, some one who may need long term disability payments, etc. Now a days, employers look at what kind of risk their employees present to them. My friend with Sarc was just terminated too.

I would not count on ADA.

Given your young age, 21, you stated, I would be inclined to really, really push for diagnosis. I don't think you need to travel to Mayo. I made a trip from the midwest out east and it was not really helpful. I got a plane ride, hotel stay and some chauferred rides, and no blood was even drawn.

I am seen at a teaching hospital tho, and highly recommend that any one with idiopathic get a full work up. I was initially told mine was idiopathic. If I was not treated for the autoimmune issue, it could damage my internal organs. It may anyway, who knows? But with the IVIG I have half a chance, altho to be honest, I wonder if the docs will add yet a more aggressive option. I am on the cusp of an autoimmune disaster, and am not real optimistic, probably because walking and getting out of bed is such an effort.

I am concerned that your pain level and fatigue will be really tough on you as a nurse. 12 hour days, forced double shifts etc. Ugh. But you are young, and hopefully the strength of youth will allow you to achieve your dream.

I suggest before you leave your current doc, get your records and make sure they do not need 'correcting'. You can have any inaccuracies corrected. I have done it myself. Once you leave the practice, they are not motivated to do that.

I pray your condition is not permanent.

I wish you the best.
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Last edited by cyclelops; 12-28-2009 at 08:30 PM.
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