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

August 10, 2009

, I will continue to pray for you and your two girls. Over the past ten years I have been to Dr Sharma 3 or 4 times. He is a very nice doctor, but he specializes in Pulmonary Sarcoidosis not Neurosarcoidosis. Therefore, do not be disappointed when you see him. He is very knowledgeable about Sarcoidosis in general, but the things that are going on with your brain he is not going to be able to help you. And not knowing all of the organs that have been affected, I can't really say how much he will be able to guide and direct you. I have been on many different types of medications and frankly the only one that has put be on an even keel has been prednisone. I was taking that and popping 24 ibuprofen every day for a couple of years, until I found a supplement that takes my pain away.

It is expensive and most people in this user group can not afford it, so they are using things that they get through their medical programs or things such as Ibuprofen that thes can afford. I just have to many things to contend with, and I really wanted the better quality of life so I am doing without on other things so that I don't have pain everyday and it gives me some energy. By the way, I don't know if you have had full strokes, because neuorsarcoidosis can disguise itself as if you are having a stroke. Stroke like symptoms the whole works. I have these types of events from time to time, paralysis the whole bit. I am sorry you are going through such a rough time. I can really understand how you feel physically and emotionally. Unfortunately there really is very few people you can go to as they can not understand. I know you just want to be a normal person all over again. Finding your way back to some level of normal see is a huge struggle.

Anyway, I want you to know that Dr. Sharma is an excellent doctor, and a straight shooter. He will tell you what he can do for you and what he can not do for you. He will tell you where he thinks you are in the process of your personal bout with this disease, the only problem is without test results he can only go by what you tell him. So you need to take all of your medical records with you so that he can review them and maybe even copy them while you are there. One visit is very difficult for him to get to know you and be able to give you specific recommendations. He will most likely want to hook up with a local doctor that you are near so that they can consult and put a plan together to help you through the rough spots. I don't know if you know this, but Neurosarcoidosis; at this point is not curable and to date I know of nobody who has gone into remission. However, there are many cases of Sarcoidosis patients who have gone into remission for

years and some that have never had it come back. I am just telling you so that you will be prepared for your doctor visit. I don't want to discourage you, I just want you to go with the data that you need to get the best result possible out of your visit. May God bless you and keep you and your girls in His care. Bob CasperTo: Neurosarcoidosis Sent: Monday, August 10, 2009 6:06:35 PMSubject: Re: Help PLEASE!! Neurosarc. Pituitary mass with Marrow infiltration/brainstem

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 15 months 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.From: Bob Casper <robertcasper@ sbcglobal. net>To: Neurosarcoidosis@ yahoogroups. comSent: 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!!

August 11, 2009

, I am sorry you have been through so much, never seems fair. There are a lot of medical people in this group, I for one am/was a Labor and delivery nurse, up until 6 years ago, when my Sarc went Neuro, and it's been a long 6 years, so I/we here understand where you are coming from. There is a lot of great information in the

Archives, just stroll to the bottom of the emails and you will find a link, There is a Dr. I think he is in LA, of course I can't remember his name right now, but again you will find him in the Archives, he is a specialist in Sarcoid. He will answer emails even.

I've been dealing with Sarc for 15 years too, however I was dx before tx, with a bx of a lymph node, and the Dr told me I had nothing to worry about, as most cases are benign. Then I got " Kennel " cough, as one of the nurses I worked with said, so been in and out of tx's since, mostly Pred. Now I'm on Remicade, and it's helped, and seems to stop the progression, except I have minimal use of my legs, can not walk very far, or very well, my balance is better, I guess that's good for the few steps I have to take:)

I truly am sorry for what you've been through, there are so many here that can relate, so be patient, everyone here is sick too. We welcome your questions, concerns and of course will rate your Rhants, so go ahead and let it rip!

I hope we can help you, Marla

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!!

August 11, 2009

Well , I notice that I am behind in my emails once again, and that you already have an appt. with Dr. Sharma, good, as you've been told one of the mods here Tracie has had good luck with him. Sorry to be so late in responding.

Marla