Quote:
Originally Posted by JoannaP79
Thanks en bloc. My neuropathy came on about 1 year ago. It was mild until December when the pain started. Does that mean too long for any hope. I worry that I haven't been caught early enough and now may have to wait few months more if I am able to access it
My symptoms are severe and debilitating so feel I am way beyond mild stage sadly.
Appreciate that it all depends and my question may not be easy to answer.
Thankyou en bloc for the really useful info :-)
|
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.