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Multiple Sclerosis Message Board


Multiple Sclerosis Board Index


Hi Monkeymom. Boy, do I feel for you. Ive suffered with ON three times- the first two times, they did not put me on anything but a dose pack of Prendisone. Although it did help the pain for a short time, the ON returned. At that point, I was also referred to a neuro-opthamologist, who also performed many of the same tests you talk about- and he ordered me IV Solumedrol for 5 days....its basically the same thing, but instead of swallowing pills (about 30 mgs reduced each day until you do only 5 mgs) I had 1000 mgs a day of the stuff shot directly into my vein. Let me tell you- besides the steroid side effects, I never felt better AND my vision cleared up, my color blindness subsided and best part- it hasnt come back again. I still see that guy every 6 months, he does the same tests- from the clicker to the dialation to the pressure- but so far, so good.

so, Im confused! Why havent they suggested trying something like this for you? You really should ask....its the usual treatment for Optical Neuritis. Im no expert, but there must be a reason why they havent done it for you- Id be curious to know...as for is it permanent? I dont know. I do know that ON is swelling of the optic nerve, and something is causing it. There is a disease called Devics, which closely mimics MS- that should be investigated also.

Im not a huge fan of pain management, however if you have seizures, then that is a differnt story. Of course you need to have that managed. You say you have had all the right tests (It certainly sounds that way) but are you seeing the right doctors? There is a piece of this not quite making sense....has anyone spoken to you about MS or Devics Disease? Has anyone sent you to a specialist to rule both of them out?? Your symtoms sounds suspiciously like both diseases.....

please, since you seem to like this new neuro, get some answers about why he isnt putting you on IVSM and whether or not he feels that exploring MS or Devics is worth it....there must be a reason, but for the life of me, since you havent been offered anything that answers these questions, make sure you get an answer! Looks like you really are your own advocate and youre going to have to push-push-push! No one should live in the pain you are in....I really hope this Neuro helps you. ill pass along a prayer for strength for ya! Let us know what he says, ok?? when do you see him?
Nikki





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