Quote:
Originally Posted by en bloc
I don't think that is too long at all for possible improvement. Of course, the earlier the better, but starting agressive treatment by that first year is pretty good...being that many wait MUCH longer just to get a diagnosis.
It's just sad that you are having to fight for a treatment that can possibly help and should already be prescribed for you with your documented conditions. But it's all about cost and being a blood product drives that cost up. I have heard about others on NHS that cannot get IVIG...even though they have well documented conditions. Just keep pushing until you get it. Go ahead and get on the list for another neuro opinion (if you can) while you continue to fight with the one you have. Don't give up!!
In the meantime, you may want to consider other treatments (immune suppressors, and/or steroids)...if you haven't already tried them. Anything to help slow or stop progression and/or reduce the amount of damage/inflammation.
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Thank you en bloc..I will keep on fighting to access it. I was taking entanercept ( enbrel) for my other problems but stopped it as I was worried about the nerve damage I already have. I get very frightened about making things worse. Problem is I am now in an awful state with severe inflammation in my eye stomach problems and awful neck back shoulder and joint pain from the AS. It has shown me that the enbrel was suppressing that. I fear I may not get ivig if I stay on enbrel as neither the neuro nor rheumy have a clue about taking both.
Things are just horrific right now to be honest. I can't even take naproxen or tramadol as I think one of them is causing my awful stomach problems.