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

[Guest guest]

Hi Bob,Thank you so much for responding. It's a difficult balance as you know balancing being vigilant about staying alive with a rare disease andgoing crazy from obsessively worrying. I was able today to get an appointment with Dr. Sharma in Los Angeles Sept. 21. Also foundNeuro Ophthalmologist in Seattle. Now just need to raise funds to get there. I am not married and I have no living family other than mytwo daughters 15 and 17. They are terrified. I have not been able to work since my stroke 15months ago. I managed to keep financesfrom falling apart until now. I knew something was wrong with me but I had no idea it would be this bad. I would rather have Hodgkins.At least that is curable. My

mother died very young 52 with a very similar clinical course as mine, although she was never diagnosed withSarcoid. It makes me suspicious. Have you ever heard of someone having neurosarc. vasculitis or brain mass? Im getting the feeling I reallygot the short end of the Sarc. stick. Feel like Im walking around with a bomb waiting to explode just when I least expect it. The last time I stroked,I was not suposed to live. The neurologist went off protocol to save me with a Hail (TPA) infusion. I was totally paralyzed with no ability to speak. Thank god he did and I recovered for the most part but that experience has left a permanent emotional scar. Again, just wanted to saythank you and its good to talk with you and others.To: Neurosarcoidosis Sent: Sunday, August 9, 2009 6:48:59 AMSubject: Re: Help PLEASE!! Neurosarc. Pituitary mass with Marrow infiltration/brainstem

Hello, My name is Bob Casper I have had neurosarcoidosis for 13 years now, like you I had it well before I was diagnosed. My Doctor is Vicki Wheelock a neurologist working at UC Medical Center in Sacramento CA. She is wonderful, however, her knowledge of Neurosarcoidosis is limited, she works to keep me level. I am on a steady dose of prednisone, 20 mg each day. I have been on this dosage since 2005 after being hospitalized for over a week. She is very busy but under these circumstances, they may take you as an emergency. When I was in bad shape I would go to her office and wait until all of her patients were gone and she would see me at 6 or 7 at night. This was unofficial, but it got me through. You have so many other issues that I don't know how to handle this. Your

heart condition brings into play nothing that I have had to deal with. My sarcoid experience deals with my lungs, brain, nerves, eyes, legs, and feet. Thank God, to the best of my knowledge my heart has not been attacked yet. I will pray for you as I know that you feel all alone. Are you married and do you have any children, if you are 40 and all of this started fifteen years ago, that would mean that you were 25. I know that this has been a heavy burden for you and wish I could do something for you, but being a sarc patient myself I know it can be a pretty lonely world. Best wishes and much healing by the grace of God, Bob Casper From: shannon.stemple <shannon.stemple@ yahoo.com>To: Neurosarcoidosis@ yahoogroups. comSent: Saturday, August 8, 2009 7:06:39 PMSubject: Help PLEASE!! Neurosarc. Pituitary mass with Marrow infiltration/ brainstem

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!!

[Guest guest]

Hello ,Thank you so much for the info. such a comfort knowing Im not alone out there. I was able to get an Appt.with Dr. Sharma on Sept. 21. I will let you know how it goes. Now I just have to raise the money to get there.Have you ever heard of anyone having neurosarc. vasculitis? Or Pituitary mass? I'm feeling like I really ended upwith the short end of the stick. Hard to know what's norm or not norm for this disease. I am grateful to findyou guys. Thanks again,To: Neurosarcoidosis Sent: Sunday, August 9, 2009 7:14:00 AMSubject: Re: Help PLEASE!! Neurosarc. Pituitary mass with Marrow infiltration/brainstem

Hi .. My name is and I'm one of the moderators. We have never taken a toll or anything like that but many of us where in the medical field, and have all ran into the issue that you're dealing with.. We have fallen from being trusted with the sickest of patients to becoming a paranoid basketcase.. Just keep pushing the doctors. BTW, there is a "Sarcoidosis Specialist" in Cali.. that Tracie one of the owners swears by.. It certainly won't hurt to call and see.. right? Here's his information. Good Luck.. and let us know if it works out..

Om P. Sharma, M.D. Health Care Center II 1520 San Pablo Street Los Angeles, CA 90033 Tel:

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

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) acutecardiac 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 halfand now I am starting all over again! I am waiting for new insurance to go through but it will take up to60days. I am afraid I won't make it that long. Can anyone give mesuggestions? 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, aftersuffering an unbelievable amount of near death experiences, Ipulled my old hospital records from 5 years ago. I was shockedto find in black and white that the Rheum. who consulted on medictated "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 soif anyone could help me cut to the chase and get to the right facility/Dr' s for help I would be forever grateful!!