What could it be??????? help me please

On my other posts kind of explain the situation in depth but after almost a year i still have...
-Tingling in face, tongue,hands
-Severe pains in my neck,head which are mostly rite on top or at the base of my skull
-feeling off balance
-feeling of burning sensation on tongue and in head
-neck pain, lower back pain
-facial pain
-vision disturbances
I AM IN PAIN ALL THE TIME, not just when I stand up I dont think but it does feel like pulling on my brain
and more

have seen 3 nuerologist
a infecious disease,cancer dr,autoimmune dr and stayed in the hospital last year
test done were
-mri / mra of brain,neck,lower spine
-spinal tap
-ct of brain and mri after the spinal tap

bloodwork showed b12 deficiency and vit d but this pain makes me not get up in the morning
i cant drive im miserable and have a 3 month old. i have not had any test for about 7 months
because drs dismissed me and said it was stress...

is it really migraines or A CSF COULD BE POSSIBLE?

[achilles2]

I am sorry you are in so much pain? Can you get to the Mayo clinic? You do not need a referral to try to get in. Here is their website:
http://www.mayoclinic.org/patientinfo/appointments.html

I hope this helps,
achilles2

[shesabstrakt]

Do they only have three locations?

[achilles2]

Yes they have only three locations. But they have patients assistance and there are places to stay that are cheep. For example I know for sure that the Mennonites have a house in Minnesota, where people stay for what they can afford. (I assume that they have one in Florida and Arizona as well.) They just do not like to have smokers because there are people who stay at the house that are medically fragile.

[achilles2]

I forgot to mention that they have provide transportaion to pick people up and drop them off at the airport and the clinic.

[horselip]

Hiya-
I  am so sorry to hear about your pain!!!

I read your post and wonder if you might indeed have a csf leak? Did they do an epidural?
Did the head pain etc start after the birth of your child? Do you get any relief when you lie down?

Another idea is Sheehan's syndrome. This is where the pituitary gland ruptures when you give birth because of all of the hormonal stresses. Has lab work been done to check the function of your pituitary gland? It would not be functioning well, and a special MRI can be ordered if the lab tests show that this might be the case.

I only think of these because I am a pituitary patient who has a csf leak...

Not to say that I am right, but that these are two things that I know about and they could be added to the "things to be ruled out" list.
Horselip