Hello everyone,
It has actually taken me over a week to be able to talk about this. :worried: I saw my nuero. on the 18th of this month. My hubby was sick and I thought that the neuro. was going to talk about different treatment options for the hashimoto encephalopathy so I let my hubby sleep and went to my appointment by my self. Was I in for the shock of my life.
I thougth it was reasonbable to think he was going to talk about what would be the best next treatment options since the 2 weeks of prednisone didn't put it remission. (according to the case studies I reviewed this was not likely anyway) Instead he told me that he had decieded to not diagnose me. (It had taken me almost 12 years to get a diagnosis) I felt suddenly so lost and let down. I sat there for the first time in front of a doctor and just started crying. :cry2:He preceeded to remind me that he didn't like using prednisone at all......much less long term. He said that a friend and colleague had taken prednisone for a term and died from rare complications of it.
He said that all the treatments for HE could have many risky side affects and the most used treatment was the long term prednisone. He then continued to say that he wasn't comfortable with any of the treatment options available and that he had decide that I should go back to Johns Hopkins. I just started sobbing. How could he do this to me?
He knew that I had had a terrible experience there at Johns Hopkins and had in the past voiced my opinion that I would never go back there after the way I treated by the doctor. Yet....he was trying to force me back there. And all I could do was to continue to cry. I couldn't pull myself together enough to even get angry.
He just acted like everything was great. He said that he would set up the appointment for me. And that I needed to make an appointment to see him in 6 months. Then through my tears I just looked at him and cried....why? You don't want to treat me or diagnose me but you want to continue to see me WHY. Then he started to give all of this stuff that I he thought Hopkins was better equiped to treat something like this and that he could over see the treatment that they suggested.
So I did manage to ask him if he was saying I did have HE. He then told me that I do have all the symptoms and the bloodwork is positive..........but he just didn't feel comfortable diagnosing and using the treatments. So I had to go back to Hopkins.
There aren't any other nueros in this area. He practice is the only one and out of the three in this office Dr. B is the best one. So I don't have the option of seeing another local nuero. Baltimore is the next closest and it is 4 to 6 hours away depending on what part of Baltimore I need to go to.
The part that is the most upsetting is that after the office gets my sx. I keep getting referred back to hopkins. They want me to go back the the doctor that stood in front of me and told me that there was nothing wrong with me (after treating me for 3years). I didn't have a nuero problem I was going through menopause........and this was because he office had misplaced my file and he couldn't find it. Then when my husband and I left he sent a letter stating I need to be evaluated by a psychologist. A week after that I received another letter that he needed me to make an appointment ASAP that they found my records and he needed to go over the results to the bloodwork. I refused! He put me through you know what and for no good reason. That is when I started to see the doctors in Saulisbury.
So.....WHAT NOW? I don't know what to do. :wall: I feel so defeated at this point. :sadwalk:
Debbie
It has actually taken me over a week to be able to talk about this. :worried: I saw my nuero. on the 18th of this month. My hubby was sick and I thought that the neuro. was going to talk about different treatment options for the hashimoto encephalopathy so I let my hubby sleep and went to my appointment by my self. Was I in for the shock of my life.
I thougth it was reasonbable to think he was going to talk about what would be the best next treatment options since the 2 weeks of prednisone didn't put it remission. (according to the case studies I reviewed this was not likely anyway) Instead he told me that he had decieded to not diagnose me. (It had taken me almost 12 years to get a diagnosis) I felt suddenly so lost and let down. I sat there for the first time in front of a doctor and just started crying. :cry2:He preceeded to remind me that he didn't like using prednisone at all......much less long term. He said that a friend and colleague had taken prednisone for a term and died from rare complications of it.
He said that all the treatments for HE could have many risky side affects and the most used treatment was the long term prednisone. He then continued to say that he wasn't comfortable with any of the treatment options available and that he had decide that I should go back to Johns Hopkins. I just started sobbing.
How could he do this to me?He knew that I had had a terrible experience there at Johns Hopkins and had in the past voiced my opinion that I would never go back there after the way I treated by the doctor. Yet....he was trying to force me back there. And all I could do was to continue to cry. I couldn't pull myself together enough to even get angry.
He just acted like everything was great. He said that he would set up the appointment for me. And that I needed to make an appointment to see him in 6 months. Then through my tears I just looked at him and cried....why? You don't want to treat me or diagnose me but you want to continue to see me WHY. Then he started to give all of this stuff that I he thought Hopkins was better equiped to treat something like this and that he could over see the treatment that they suggested.
So I did manage to ask him if he was saying I did have HE. He then told me that I do have all the symptoms and the bloodwork is positive..........but he just didn't feel comfortable diagnosing and using the treatments. So I had to go back to Hopkins.
There aren't any other nueros in this area. He practice is the only one and out of the three in this office Dr. B is the best one. So I don't have the option of seeing another local nuero. Baltimore is the next closest and it is 4 to 6 hours away depending on what part of Baltimore I need to go to.
The part that is the most upsetting is that after the office gets my sx. I keep getting referred back to hopkins. They want me to go back the the doctor that stood in front of me and told me that there was nothing wrong with me (after treating me for 3years). I didn't have a nuero problem I was going through menopause........and this was because he office had misplaced my file and he couldn't find it. Then when my husband and I left he sent a letter stating I need to be evaluated by a psychologist. A week after that I received another letter that he needed me to make an appointment ASAP that they found my records and he needed to go over the results to the bloodwork. I refused! He put me through you know what and for no good reason. That is when I started to see the doctors in Saulisbury.
So.....WHAT NOW? I don't know what to do. :wall: I feel so defeated at this point. :sadwalk:
Debbie
