pseduotumor celebri

[grimace]

I was diagonsed with pseduotumor celebri about 1 year ago. I have had 8 LP with only temporary relief. I have expirenced kidney stones due to medication that they have put me on. One doctor tells me that I am going blind and another tells me no. I am just trying to find a specialist to help me but I live in CT and there doesn't seem to be any. I am very desperate and need help. I was wondering if anyone had any suggestions?

[selmaS]

Hi...I have conditions that r related...chiari. Most chiari drs do treat ur condition.We do have info here on MedHelp in the chiari forum.

U may want to try and look up The Chiari Insitute or google Chiari Care Clinic
Both r top in the field.Many of us know we do need to travel to find a dr that specializes in this in order to get the correct treatment.

I hope to see u in the chiari forum.

Good luck
Godspeed
"selma"

[Cath278]

Hi grimace, I have IIh or pseduotumor celebri. What do you want to know?Im guessing that you are taking Diomax. It does have side effects of  causing kidney problems. Could you ask your dr if you could switch to a different medicine?There are a few different ones on the markket. A different one may suit you better.
About your eyes, calm down.Yes there is a risk of losing your eyesight but only if you dont take care of it. Do you know if you have Papillodema ? That is swelling of the optic nerve. Are you having any visual problems?
You need to see a Neurologist and a Ophthalmologist. They will know how to take care of you and your eye sight. Go to your dr and ask them for a referral. This is a very rare illness and alot is still not known about it.Your dr has done his best but needs to send you on to a specialist now. Try not to worry.If I can help in any way let me know, Cath278.