Guest guest Posted September 2, 2010 Report Share Posted September 2, 2010 Ever since I started the hydrocortisone treatment for adrenal deficiency, I constantly felt stinging sensation in my brain. In the beginning, whatever I ate, such as cold food from the fridge, or spicy food, I could feel it in my brain. When I first described to my endo, he said the blood brain barrier is breached. Recently I saw a neuro-endocrinologist in NYC. He said I would not feel the BBB breach at all. Have you ever felt your BBB is breached or broken down? Thanks, Ruby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 have you ever thought about calling one of the research offices to ask them this? kennedy krieger neurology, UNC, etc. UNC has a huge neuro science dept, like a city block or more. you could probably call one of these research depts and talk to someone. good thing about university is that they are open to learn and also to discuss. it was a resident at a teaching hospital who finally listened to me and tested my son for what he has (ALD). saw her recently while he was in ICU after a trip in amb. to hospital with seizures and she affirmed that we needed to get up to raleigh durham hospitals. have appt with a specialist in leukodystrophies sept 13. have any of you ever thought about getting tested for something besides MS? so many carriers of this have been misdiagnosed. kerry > > > Ever since I started the hydrocortisone treatment for adrenal deficiency, I > constantly felt stinging sensation in my brain. In the beginning, whatever I > ate, such as cold food from the fridge, or spicy food, I could feel it in my > brain. > > When I first described to my endo, he said the blood brain barrier is > breached. Recently I saw a neuro-endocrinologist in NYC. He said I would not > feel the BBB breach at all. > > Have you ever felt your BBB is breached or broken down? > > Thanks, > > Ruby > > > -- www.caringbridge.org/visit/jackmccall Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 have you ever thought about calling one of the research offices to ask them this? kennedy krieger neurology, UNC, etc. UNC has a huge neuro science dept, like a city block or more. you could probably call one of these research depts and talk to someone. good thing about university is that they are open to learn and also to discuss. it was a resident at a teaching hospital who finally listened to me and tested my son for what he has (ALD). saw her recently while he was in ICU after a trip in amb. to hospital with seizures and she affirmed that we needed to get up to raleigh durham hospitals. have appt with a specialist in leukodystrophies sept 13. have any of you ever thought about getting tested for something besides MS? so many carriers of this have been misdiagnosed. kerry > > > Ever since I started the hydrocortisone treatment for adrenal deficiency, I > constantly felt stinging sensation in my brain. In the beginning, whatever I > ate, such as cold food from the fridge, or spicy food, I could feel it in my > brain. > > When I first described to my endo, he said the blood brain barrier is > breached. Recently I saw a neuro-endocrinologist in NYC. He said I would not > feel the BBB breach at all. > > Have you ever felt your BBB is breached or broken down? > > Thanks, > > Ruby > > > -- www.caringbridge.org/visit/jackmccall Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2010 Report Share Posted September 14, 2010 On Sat, Sep 4, 2010 at 10:16 AM, kerry mccall wrote: > > > have you ever thought about calling one of the research offices to ask them > this? kennedy krieger neurology, UNC, etc. UNC has a huge neuro science > dept, like a city block or more. you could probably call one of these > research depts and talk to someone. good thing about university is that > they > are open to learn and also to discuss. it was a resident at a teaching > hospital who finally listened to me and tested my son for what he has > (ALD). > saw her recently while he was in ICU after a trip in amb. to hospital with > seizures and she affirmed that we needed to get up to raleigh durham > hospitals. have appt with a specialist in leukodystrophies sept 13. > have any of you ever thought about getting tested for something besides MS? > so many carriers of this have been misdiagnosed. > kerry > > On Thu, Sep 2, 2010 at 8:44 PM, benzo4321 <ruby.none@...<ruby.none%40gmail.com>> > wrote: > > > > > > > Ever since I started the hydrocortisone treatment for adrenal deficiency, > I > > constantly felt stinging sensation in my brain. In the beginning, > whatever I > > ate, such as cold food from the fridge, or spicy food, I could feel it in > my > > brain. > > > > When I first described to my endo, he said the blood brain barrier is > > breached. Recently I saw a neuro-endocrinologist in NYC. He said I would > not > > feel the BBB breach at all. > > > > Have you ever felt your BBB is breached or broken down? > > > > Thanks, > > > > Ruby > > > > > > > > -- > www.caringbridge.org/visit/jackmccall > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2010 Report Share Posted September 15, 2010 No, I have not called any research office. I work in NYC where I have access to some of the top doctors in the nation. Even so, many cannot explain the symptoms that I have. But the top MS specialist actaully ruled out MS after my spinal tap result was available. Since the only other antibodies that have been found are thyroid and sjogren's, he gave me a diagnosis of sjogren's demyelinating disorder. I don't have the classical sjogren symptoms of dry mouth and dry eyes. The only other place where I can seek opinion is Hopkins. They have a sjogren's center. However, they request a referal letter from the MS top doctor and visit notes. So I still have to go back to the MS doctor and ask for those things. > > > > > > > Ever since I started the hydrocortisone treatment for adrenal deficiency, I > > constantly felt stinging sensation in my brain. In the beginning, whatever I > > ate, such as cold food from the fridge, or spicy food, I could feel it in my > > brain. > > > > When I first described to my endo, he said the blood brain barrier is > > breached. Recently I saw a neuro-endocrinologist in NYC. He said I would not > > feel the BBB breach at all. > > > > Have you ever felt your BBB is breached or broken down? > > > > Thanks, > > > > Ruby > > > > > > > > > > -- > www.caringbridge.org/visit/jackmccall > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.