Help PLEASE!! Neurosarc. Pituitary mass with Marrow infiltration/brainstem

August 8, 2009

Hello All,

I am thankful to find this support group! I am 40 living in California and

cannot seem to get the right help. Ironic because I am/(was) acute

cardiac care nurse and have the medical connections. Yet I am completely alone

here! After five long years and three strokes/one intracranial dissection, and

now seizures I ALONE put the pieces together and finally got the right

diagnosis! Really, does this happen to everyone? How many of us are out there

statistically?

Where is the best facility for treatment? UCSF and Stanford are closest to me.

Unfortunately after surviving when I was not supposed to from my stroke/arterial

dissection, I have lost my medical insurance.

I have fought so hard to stay alive over the last year and half

and now I am starting all over again!

I am waiting for new insurance to go through but it will take up to

60days. I am afraid I won't make it that long. Can anyone give me

suggestions? I would greatly appreciate it.

I first stroked and developed double vision 5years ago after repeatedly going to

Dr's for 4months with no help. Now, after

suffering an unbelievable amount of near death experiences, I

pulled my old hospital records from 5 years ago. I was shocked

to find in black and white that the Rheum. who consulted on me

dictated " even though I had an elevated ace, cranial neuropathy's,

and white matter changes, not to mention vertigo,double vision,difficulty

swallowing etc..... He felt confident that I did not have neurosarc! " Only

based on a chest xray that was read wrong! THE PHYSICIAN NEVER TOLD ME ABOUT

THIS DISEASE OR MY BLOOD TEST OR ANY POSSIBILITY OF SARCOIDOSIS!!! He

discharged me and never said a word..

Five LONG years have gone by and now I am presenting end stage with no health

insurance!! Can anyone make any suggestions? I can trace my symptoms of

pulmonary involvement back almost 15 years ago when I was told I developed adult

onset asthma with chronic fatigue and depression . Sound familiar to anyone?

15 years without treatment has caused my body to be overwhelmed by this disease.

I have Pulm./eye/salivary/skin/lymph/bone/and now brain involement. I don't

have anymore time to spin my wheels so

if anyone could help me cut to the chase and get to the right facility/Dr's for

help I would be forever grateful!!

Recommended Posts