I couldn't agree with you more. I honestly think they just don't get it. They can't empathize. And if it's not that, then it's worse: they just don't care. It's really deplorable. They need to change the protocol. I'm not a fan of such powerful meds with horrible side effects, but a very short and immediate course to stop serious, longterm damage might be worth it.
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Originally Posted by Still hopeful
Speaking of the steroid infusion...in hind sight I think if I had a high dose M prednisone in the first few weeks of the onset...I would be doing better and maybe more of us would be leading more pain free lives...but the first neuro I visited just said...its just stress and it will go away instead of taking immediate action. It just seems like they are afraid to act...why? There was no deep concern or urgency...it should be "OH S%&T!...these symptoms he is explaining to me can cause CHRONIC pain...I better get him on some type of inflammatory control protocol." This is what should happen when people show up at Neuro offices complaining of these symptoms. I am sorry...I am venting a bit.
Sven
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Hi Sven, if it makes you feel any better- I was started on prednisone and developed Cushings Syndrome as a side affect from the prednisone. It was horrific and taken over 2 years to semi-recover from it. I was wishing they had tried a strong pain Med treatment first! Although prednisone was thee only thing tried that helped the excruciating foot pain it made such a mess of me in other ways I that I still struggle with. I'm very interested to know if the IVIG helps so please do keep us posted. And if anyone reading this comes across any medical journal articles discussing IVIG as a treatment please post link for me as I would like to print for my Drs. Thanks. I hope we all find pain relief but more importantly root causes to disease modify if possible![/QUOTE]