Ms or psuedotumor cerebri?

[Britneyaf01]

2 years ago I was dx with pseudotumor cerebri after being admitted to the hospital for 3 days for severe headaches. I was feeling like crap my head was hurting like I was being stabbed with a huge knife the pain was so bad I was vomiting.they did the whole workup mri ct scans lumbar puncture blood work... My radiology reports and blood work were all clean according to my neurologist my lp came back with 2 oligoclonal bands otherwise normal slightly elevated pressure.i was sent to opthamology in the am to find severe pappilledema billaterally however no vision  loss im still 20/20 and viual fields were acceptable.neuro put me on diamox which made me super sick... She dx me with pseudotumor and has since changed my med to topamax as a prophalactic to help prevent the headaches.it doesnt do a whole lot.but neither does anything else and I just cant stomach as you go pain killers.my head hurts daily with infrequent breaks of non painful days..i have frequent numbness and tingling in my feet and calves sometimes as far up as my knees if I have been on my feet all day and in my right hand.i have difficulty grasping simple words and concepts to extract from my thoughts and pull forward at times its so frustrating as im not slow or even short on ways to express my thoughts.ive always been a bit boisterous,obnoxious even in my intelligence. The pains travel at times from my head like an electrical shock wave through my shoulders and arms and even down my spine if I bend my head forward. The psuedotumor cerebri the headaches the papilledema none of this is getting better yet I was told it would! Things seem to be declining and at a rather rapid rate at times.sometimes I feel like a dolt with parkinsons like I cant even pick up a glass of water without sloshing every drop on myself and my floor before it reaches my mouth..like I cant brush my daughters hair with out jerking out every strand on her poor little head and I dont have the strength even to ponytail it! Its frustrating and embarassing.i dont go in public much I dont enjoy stares or kids asking their parents whats wrong with me.im 29 and feel 79.i hate that my body jerks and twitches violently and uncontrollably and I hate even more that theres so much tingly numbness like I fell asleep in places that shouldnt be sleeping!i havent had another mri or ct or lp since my hospital admission.apparently my neuro doesnt deem it important..just follow ups in her office to talk.. Wants to send me to the neurosurgeon to discuss shunts..(uhhh NO effin thanks lady!) And back to the opthamologist to check the papilledema...WHICH since my vision is a-okay they put in my chart that the papilledema is the baseline for ME not to look for further cause or concern since its been monitored for 2 years with no vision loss or change... Sooo I guess long story short..i should be happy??? Wth?

[Daniel M Prevedello, MD]

Also, if the pressure is elevated a ventricular or lumbar peritoneal shunt should be discussed with your neurosurgeon.

Thanks

[Daniel M Prevedello, MD]

Dear britneyaf01

At this point I would recommend a new lumbar puncture to see where you are in terms of opening pressure.
If you still having papilledema you need to discuss with your ophthalmologist the indication of optic sheeth fenestration