what a difference this makes?!?!

Question

Hello all... well i went to see my optic neurologist today and he told me a diagnosis... will have to post it later or tomorrow so i can get the spelling right but it is not ms as of now so he says and he put me on medication so that the fluid in my spine will go down. i also told him about the ridiculed idiot that I seen yesterday that called himself a neurologist and he laughed and said that he is sorry that i had to experience that but he has heard a lot of complains on this guy and that is why he doesnt send his patients to him. GEEZ.... GUESS I SHOULD HAVE LISTENED TO THE OPTIC NEUROLOGIST. OOPS MY MISTAKE  I AM NOT SURE IF THIS GUY KNOWS HIS STUFF BUT HE SEEMED LIKE HE DID SO WHO KNOWS trying to get good health care now a days is impossible.

tamhart9 · Answer

thanks so much!! It just seems like these symptoms linger around a lot. I guess only time will tell.

young at heart · Answer

YOU'LL ALWAYS BE PART OF OUR FAMILY.

AS YOU KNOW MANY HERE HAVE MORE THAN ONE DIAGNOSIS,I HAVE MS AND ARACHNOIDITIS(FUSING OF THE LUMBAR NERVES).

SWEETIE ALL YOU CAN DO IS FOLLOW THE DRS ORDERS NOW AND TIME WILL TELL.

I HAVE READ SOME OF WHAT THEY TOLD YOU , YOU HAD.

PLEASE KEEP A JOURNAL OF YOUR SYMPTOMS AND IF NEED BE FOLLOW UP WITH ANOTHER NEURO.

YOUR IN MY HEART AND PRAYERS,KEEP US POSTED

T

tamhart9 · Answer

Well as you all know that i was diagnosed with that pseudotumorcerebri just recently. I have an appointment with my pcp tomorrow. I am beginning to wonder if i was diagnosed wrong. I mean my legs dont always work and I too have a lot of other symptoms also. The primary symptom of this disease or disorder whichever is a headache. I dont think I have ever had a headache as severe as they say they are. I had a lot of the symptoms that are similar with MS. They started doing test to check for MS and well that is what I ended up with.I am still learning about this disorder and as I learn more I can and will keep you and everyone posted. I honestly just put this in God's hands. He is the only one who knows the answers and I believe when the time is right he will share them with us. I just hope it is sooner than later.

mschvusangel · Answer

I just posted in another thread, so instead of trying to re-type everything I will paste.....

Friday I went for a routine eye exam and ended up there for over 3 hours!!!  After having my eyes dilated the Dr. found that my optic nerve has a great deal of pressure on it, and all of my blood vessels are swollen.  She has referred me back to my Neurologist to have a spinal tap done to test the pressure.

She seems to think I have pseudotumorcerebri (Anyone ever heard of this??) due to excessive spinal fluid.  I'm not sure if this ties in with all the other things that have been happening to me or  causing some of the symptoms, but at least now I do know that there is something going wrong and I have proof.  I just hope this isnt the beginning of another string of dead end testing.  

I am beginning to swell pretty bad all over my body especially in my legs (to the point of it causing pain), and have been on diuretics for over 4 months with no relief.
My legs are beginning to feel like they are buzzing when I sit for too long.  Very strange feeling!!!

I have an appointment this afternoon with an endocrinologist about the Vitamin D issues, so maybe he can help out some. 

And for tamhart....I don't have the headaches either!!!  I used to have what was diagnosed as "migraines"  several years ago, and am still not sure that's exactly what it was.  I haven't had a headache in several years though.  I do have an extreme pressure in my head when I have the eye, and ear symptoms, but not an actual headache.  Most of the time my head feels like it's just really swollen along with the rest of my body.  I am overweight, but have gained about 30 lbs. since all of these weired symptoms started.  I have posted in several other threads and forums on here with all of my other symptoms and problems if you wish to read all of the other stuff....lol  Just don't label me as "crazy" like everyone else...; )

tamhart9 · Answer

MY MRI SHOWED THAT THERE WAS SOMETHING MILD ON THERE BUT THEY WERE NOT SURE WHAT IT WAS.... THAT IS WHY THE DID THE LP THE LP IS THE ANSWER FOR THIS ONE... I HOPE THIS HELPS

LATW · Answer

Did your ON show up on your MRI?  Mine was said to be "mild" both times.  Maybe mild to them but not to me!!  I am about 25 pounds over my ideal weight.  :(

L

tamhart9 · Answer

Well yes I agree with you but on the other hand I hope the diagnosis is a correct one. As I read up on this diagnosis to learn more I find that I never had headaches. What I am saying is that it is a blessing to not have MS and although I wish I could say my leg pains and other system still exsist I am still going to pray and be a blessing to correct this issue if it truly is what he says. I will continue to be a part of this family if I am allowed to be... only because you all are the best and what as kept me through this nightmare. I still want to come to the weanie roast tomorrow and I just love this forum. But if you all want me to leave since I have a diagnosis I will definitely understand.

young at heart · Answer

SWEETIE I JUST READ UP ON THE PSEUDOTUMOR CEREBRI,I AM SORRY YOU WERE DIAGNOSED WITH THIS.

I READ UP ON THIS ON THE MAYO CLINIC WEB SITE.

WHAT I DID READ THAT GOT MY ATTENTION WAS WATCHING AND TRYING NOT TO TIGHTEN YOU ABDOMINAL MUSCLES AS THIS CAN CREATE VISUAL PAIN AND BLURRY VISION

THIS WEB SITE STATED THAT THEY REALLY DON'T KNOW WHAT CAUSES IT BUT THEY DO BELEIVE THAT THE WEIGHT AROUND THE TORSO MIGHT BE THE CAUSE OF THE INCREASED SPINAL PRESSURE.THEY BELEIVE WITH MINIMAL WEIGHT LOSS THAT THIS CAN LESSON THE VISUAL SYMPTOMS AND LOWER THE SPINAL PRESSURE.

IT DID SAY THAT HEADACHE PRESSURE WAS A MAIN SYMPTOM,BUT NOT IN ALL CASES.

SWEETIE I WISH I COULD REACH OUT AND GIVE YOU A HUG,BUT SENDING THEM CYBERLY.

THIS TAKES YOU CURRENTLY OUT OF LIMBO LAND,BUT THIS INFO IS REALLY VALUABLE TO OUR LIMBO LANDERS AS IT CAN BE CLASSIFIED AS A MIMICER OF MS WITH THE ON AND AND YOUR OTHER SYMPTOMS.

YOUR EYE SPECIALIST IS A REAL GEM,THE MAYO WEB SITE STATED THAT ONLY A TRAINED AND EXPERIENCED EYE SPECIALIST DIAGNOSES THIS DISORDER.THIS IS NOT A COMMON DISORDER 1 IN A 100,000.THIS EYE DR IS A KEEPER.

I TRUELLY WISH THAT THE DX WAS DIFFERENT,TRUELLY HAPPY FOR YOU THAT THIS IS NOT MS.

I HOPE YOU STAY WITH YOUR CYBER FAMILY HERE,IF YOU BECOME MISSING,QUIX AND HEATHERS CYBER MOB WILL COME A LOOKIN.

YOUR IN MY PRAYERS

T

tamhart9 · Answer

ALSO FORGOT TO MENTION THAT  I AM OPEN TO ANY SUGGESTIONS AND COMMENTS. THANKS TO ALL

tamhart9 · Answer

sorry it took so long for me to answer back however i was sent to the optic neuritis because I was having vision problems like double vision, and blacking out at times. so my pcp sent me to the optic neuro who then ran a series of eye examsand determined that i had optic neuritis which then lead me to a brain mri and a lumbar puncture. which lead to this diagnosis which again is still in my car which my hubby is going to go get for me even though it is 1:19 in the morning.... something about the fluid in my spinal cord and brain is elevated not to a dangerous level but must be treated to prevent higher levels. he said it could be caused from being over weight but there is no guarantee or evidence that is what causes it. he gave me some papers and information to read about it and that is what i am going to do. i hope this guy knows what he is talking about and besides if it is caused by the weight then i guess i can agree to slim down some. what can it hurt??? then if the symptoms still are here then we can look into something else so how knows where i go from here.... i know i am still not able to sleep at night because of the leg pains and hip pains and my feet burn like hell but who knows maybe it is just me maybe these doctors do know what they are talking about but who knows i guess its worth a try... but on the lighter side of things her is the diagnosis...pseudotumor cerebri. a condition in which high pressure inside your head can cause problems with vision and headache. In the days before CT and MRI scan, doctors who noted swelling of the optic disc were concerned about the possibilty of a tumor within the head.Patients with optic disc swelling but no evidence of a tumore where said to have "Pseudotumor."  WHAT IS FUNNY ABOUT THIS WHOLE THING IS I HAVE NEVER HAD A HEADACHE????

LATW · Answer

I AM SORRY, I DON'T RECALL WHAT SENT YOU TO THE OPTIC NEUROLOGIST, DID YOU HAVE OPTIC NEURITIS?  

THAT IS WHAT I HAVE AND I AM TRYING TO GET SOME ANSWERS

L