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Originally Posted by Hope15
Jay, I am so sorry for everything that you are going through. Yes, It is true we all are different when it comes to this disease, but one thing I have come across quite a lot on the net is the treatment of patients by many neurologists. Once they find out that it's neuropathy, especially when the cause is unknown, many patients feel tossed aside. I know I did. My primary doctor actually said he was disappointed in my neurologist behavior, and said, "I'm so sorry" before setting me up with another referral. My neurologist wasn't a mean man, Just uninterested and disconnected once he did his tests. I realize there are exceptions, and there are some very good doctors out there, but since I have been stricken with this and have talked to other neuropathy sufferers on the net, I find it often very common to be treated in such a matter.  |
Quote:
Originally Posted by jakatak
I am so sorry for your illness. You reallly put in perspective how this disease can affect people so differently. I hope you can find some type of relief from your pain. I know that onremitting pain is horrible, and you have a 5 star example of how bad it can be. Where the docs able to come up with a cause of your PN? Or, is it idiopathic in nature like so many people afflicted with this disease? The problem with this crummy disease, is it is invisible to those around us. We aren't jaundiced, or in a wheelchair....well at least those that are still fighting sensory PN in their hands or feet. Again, I hope you can find a doctor who can work with you and show some concern. Have your tried Lyrica? It has been a much better drug for me than neurontin...just a thought.
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Thanks everyone! :-) Since the FDA has not approved Lyrica for SFN treatment, my insurance company will not cover it (and its VERY expensive without insurance). My doctor will not Dx a malady which the FDA does approve Lyrica for. I guess he's too above-board to do that, as a professional myself (accountant), I understand his position, though it doesn't help me out much.
I did see him again today and he asked if I had tried Oxycontin, apparently he doesn't remember that my insurance company won't cover Oxy and prefers Methadone instead. He wouldn't increase my Methadone and he can't up the Neurontin since I'm at the max allowed humans a day. He didagree to write a disability letter, though said he would only be telling them what I have told him since SFN cannot be confirmed by testing. I'm afraid it may not be much help with my claim, but I have no other choice, unless one of you have an idea.
Anyway, thanks for the nice comments. I know I ramble on too long.
Jay