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

[Guest guest]

I can't help with doctors in the california area, and I don't know your financial situation. I am an adjudicator with soc sec. If you qualify for SSI and SSD, (the local soc sec office can tell you) apply. If you qualify f

Subject: Help PLEASE!! Neurosarc. Pituitary mass with Marrow infiltration/brainstemTo: Neurosarcoidosis Date: Saturday, August 8, 2009, 10:06 PM

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!!

[Guest guest]

So sorry/mishit on the computer/

If your finances qualify you for SSI (local soc sec office can tell you if they do); apply for both SSI and SSD. With your diagnoses and strokes, you should meet a listing, I would have to know particulars to be able to know for sure - this is a fast shot to approval, at the very least you meet a med-voc allowance. Why I am telling you this when you are short on time is, if you meet the qualifications for the SSI part, you can ask your adjudicator about PD'ing the case (presumptive disability). I do it quite often for clients that I know are more than likely going to meet a listing, and need medical assistance. I direct the social security office to do an emergency release of funds and Medicaid, until I can finish the social security disability determination on the case. This puts the claimant on the fast track and releases a small amount of money around $674/mth, but the medicaid is the most important;

and it is released the first of the month after the case is PD'd. No matter what the end result of the case is you are not obligated for any monies, or services provided by the PD.

See if any of the University run hospitals have programs like the "Shands Card" in ville, again if you qualify financially, and live in their county; they provide a card for medical, pharmaceutical, and testing at no cost to the claimant.

I'm sure you already know about NeedyMeds.org - the pharmaceuticals who make the medicine run this site. Right now you have no insurance so you could probably apply for top notch medicines at no cost to very little. The paperwork is usually (1) page, when I worked at Voc Rehab we used this site to help our clients get their meds.

I hope at least some of this information may be helpful. Connie/FL

Subject: Help PLEASE!! Neurosarc. Pituitary mass with Marrow infiltration/brainstemTo: Neurosarcoidosis Date: Saturday, August 8, 2009, 10:06 PM

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!!

[Guest guest]

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 To: Neurosarcoidosis Sent: 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]

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!!