We can’t ‘sugar coat’ nor diagnose, per se here? We are only patients ourselves!

August 4, 2010 at 9:17 pm

But, being patients, and also victims of the ever so many ‘systems’ that make us jump thru hoops to get diagnosed [even] or treated [if lucky] It’s all one heck of a battle….and all up hill!
Many try to share care and fears and questions, there are limits on such a forum? There are others tho, not as active where more can be said and shared but then there are more [such as docs] who could read it.
Therefore? Many tippy toe around here and at other resources because of that possiblity that it is NOT a CLOSED forum! There’s a lot of legal stuff that can and does go with it? But no, mind… in this case? As in most cases, docs NEVER EVER say IT’s DEFINITELY This over THAT! They never, ever give you ‘odds’ for improvement or against, nor do they never, ever give you a potential diagnostic set of ‘odds’ for improvement or not!
I’ve never had a doc tell me I’ve got X% odds of getting better.. only wishy-washy pablum that it might or mite not…. Further? Treatments w/various meds and other therapies? The odds are pretty vague there too.
I’ve got CIDP, which has in the past been called a ‘chronic GBS’? And I’ve got to tell you that the only way treatments can be determined and then treated is thru good diagnosis! Insurance or not? It can and does mean the difference between living in a rehab center on life support [IF it gets that bad?] or not. Key to this all is the ultimate cost of LIFE and the quality of LIFE that might be possible, tho unable to pay for it.
What you need right now? Is to find a doctor who can be an advocate for your sister. To do that? You mite have to get access to her medical records [if allowed] and become HER ADVOCATE. That will get you diagnosis. Other hurdles are access to disability and treatments – simultaneously I’m guessing. Those things for us who are immune compromised find it hard enough to do things for a couple of hours? But doing the whole disability shebang can be a fast and furious full time job for a few months. Are you up to it?
Keep asking questions, maybe someone more wise than I can answer the disability aspects [I’ve been chicken so far? But must address them soon myself.]. There are answers out there? For this sort of problem, they’re likely not simple? But definitely doable! Keep faith and hope that doing what you can can get you where you need to be! Hugs !!!!!!!!!!!!