Charley123's Profile
Update
Journals
Jan 25, 2010 - 1 comments
Tags:
Tags:
01 10 letter to medhelp about Dr. B
I put it in this journal because it was a most distressing dr visit and I still get very depressed over it. (today is Jan 25-2010
My previous neuro (#2) coldly dismissed me and thought I should get another opinion. I had gone to him to see if I had trigeminal neuralgia. (I didn't). At my first visit he seemed to care about me and thought I might be part of the small percentage of people who do not show up on MRI's with MS because of my family history (mother & sister with MS) He put me on Copaxone because he thought I had Possible MS.
On my third visit he was extrodinarily rude. He was almost yelling. He marched into the room and told me that I do not have MS and that I was wasting my time coming to him. And then told me that I was wasting good medicine that could be going to other people. Stun! (I really don't think Teva will run out of Copaxone)
He never asked me how I was doing since the last visit 2 months ago..didn't seem to care. Then told me, as he was rolling his eyes to the ceiling, that I could get a 2nd opinion with an MS expert who was joining the practice.
I was really sick when I went to see him. I could hardly respond.
My gut told me to run from this whole group. I went anyway, last week. It has taken me days to come down from the nightmare. Sorry this is a long vent.
She, (neuro #3) began by asking me to tell her what had happened over the last few years. I told her that two weeks ago I had fallen and gone to the ER and had Post concussion syndrome. I thought my memory was bad before, but it is bizarrely worse right now. She didn't bat an eye or even acknowledge what I told her.
I fell because my right leg just didn't do it's job.
I asked her if she had seen my records from the other neuro. She said she had, but wanted me to put it in my own words
She just kept asking me specific questions in detail and I could get some of it in order and couldn't do much after that. (she was obviously annoyed with me) I have timelines that she says she had read. My husband filled in a lot of details for her. I was so confused and could sense where this was all going and totally fell apart. She just sat there like a frozen statue. There was a box of kleenex right next to her and she never offered me one.
She kept at the questions and I had to tell her again that I was having severe cognitive problems and my husband would have to answer...I felt like I was in a torture chamber.
I need feedback on what she told me. She has just been certified in MS/Neurology.
She told me:
1. that I was too old to have relapsing remitting MS and that everyone over 60 only gets progressive MS.
(has anyone heard this?) interesting article from Spain
http://www.docguide.com/news/content.nsf/NewsPrint/852571020057CCF6852571FA00692EDE
2. I don't have progressive MS because I'm not debilitated enough
3. Copaxone should have done nothing for me (as I am too old for relapsing remitting MS)
(I've been on Copaxone since August. After about 2 months I did feel better. I had symptoms but they were not
terrible. I even stopped using my cane.)
4. Sensitivity to heat and humidity is not considered (by their office) as a marker for MS
(well, it isn't when it's looked at by itself, but in combination with all my other symptoms...Huh?)
5. She told me that I had lesions on the MRI but they did not meet the McDonald criteria. She didn't know what they
were, but were probably due to age
6. She told me that I just didn't have a good enough story to convince her that I had MS. (how could I do that after
whacking my head...I wanted to scream at her.)
7. That only 4% of the people who have MS symptoms and who don't meet the McDonald criteria-actually have it.
(I couldn't be part of that group?)
I told her that I had been tested for the mimics of MS and all tests and others as well came back negative. I also told her that I was not making this up and did not have conversion disorder and that I had no deep seated need to have MS. Because of my family history, I just wanted to rule it out and so far that no neurologist has given me a good explanation as to why it was not MS. I was really PO'd.
I don't know what to do at this point. I am getting a walker because my balance is terrible. I've almost fallen several times since two weeks ago.
My husband helped me put this together as sometimes I find myself talking ragtime. Scary to be me right now. My regular doc says it may take months to improve from the fall.
I put it in this journal because it was a most distressing dr visit and I still get very depressed over it. (today is Jan 25-2010
My previous neuro (#2) coldly dismissed me and thought I should get another opinion. I had gone to him to see if I had trigeminal neuralgia. (I didn't). At my first visit he seemed to care about me and thought I might be part of the small percentage of people who do not show up on MRI's with MS because of my family history (mother & sister with MS) He put me on Copaxone because he thought I had Possible MS.
On my third visit he was extrodinarily rude. He was almost yelling. He marched into the room and told me that I do not have MS and that I was wasting my time coming to him. And then told me that I was wasting good medicine that could be going to other people. Stun! (I really don't think Teva will run out of Copaxone)
He never asked me how I was doing since the last visit 2 months ago..didn't seem to care. Then told me, as he was rolling his eyes to the ceiling, that I could get a 2nd opinion with an MS expert who was joining the practice.
I was really sick when I went to see him. I could hardly respond.
My gut told me to run from this whole group. I went anyway, last week. It has taken me days to come down from the nightmare. Sorry this is a long vent.
She, (neuro #3) began by asking me to tell her what had happened over the last few years. I told her that two weeks ago I had fallen and gone to the ER and had Post concussion syndrome. I thought my memory was bad before, but it is bizarrely worse right now. She didn't bat an eye or even acknowledge what I told her.
I fell because my right leg just didn't do it's job.
I asked her if she had seen my records from the other neuro. She said she had, but wanted me to put it in my own words
She just kept asking me specific questions in detail and I could get some of it in order and couldn't do much after that. (she was obviously annoyed with me) I have timelines that she says she had read. My husband filled in a lot of details for her. I was so confused and could sense where this was all going and totally fell apart. She just sat there like a frozen statue. There was a box of kleenex right next to her and she never offered me one.
She kept at the questions and I had to tell her again that I was having severe cognitive problems and my husband would have to answer...I felt like I was in a torture chamber.
I need feedback on what she told me. She has just been certified in MS/Neurology.
She told me:
1. that I was too old to have relapsing remitting MS and that everyone over 60 only gets progressive MS.
(has anyone heard this?) interesting article from Spain
http://www.docguide.com/news/content.nsf/NewsPrint/852571020057CCF6852571FA00692EDE
2. I don't have progressive MS because I'm not debilitated enough
3. Copaxone should have done nothing for me (as I am too old for relapsing remitting MS)
(I've been on Copaxone since August. After about 2 months I did feel better. I had symptoms but they were not
terrible. I even stopped using my cane.)
4. Sensitivity to heat and humidity is not considered (by their office) as a marker for MS
(well, it isn't when it's looked at by itself, but in combination with all my other symptoms...Huh?)
5. She told me that I had lesions on the MRI but they did not meet the McDonald criteria. She didn't know what they
were, but were probably due to age
6. She told me that I just didn't have a good enough story to convince her that I had MS. (how could I do that after
whacking my head...I wanted to scream at her.)
7. That only 4% of the people who have MS symptoms and who don't meet the McDonald criteria-actually have it.
(I couldn't be part of that group?)
I told her that I had been tested for the mimics of MS and all tests and others as well came back negative. I also told her that I was not making this up and did not have conversion disorder and that I had no deep seated need to have MS. Because of my family history, I just wanted to rule it out and so far that no neurologist has given me a good explanation as to why it was not MS. I was really PO'd.
I don't know what to do at this point. I am getting a walker because my balance is terrible. I've almost fallen several times since two weeks ago.
My husband helped me put this together as sometimes I find myself talking ragtime. Scary to be me right now. My regular doc says it may take months to improve from the fall.
Dec 13, 2009 - 0 comments
As 2009 is coming to a close, I've been looking back and thinking....YIKES!!!! Don't know what else to say about it. The MS symptoms were still the same and I went to a new neuro. I finally got my courage up to try someone else. At first he seemed to be an incredible neuro that listened, was compassionate, and very knowledgeable about MS. MMMM...that didn't continue. On my first visit he said that I had MS and that I could go on Copaxone as even though I didn't have lesions that fit the McDonald Criteria, he was certain that given my symptoms and family history, it was MS.
On the second visit he prescribed Copaxone and on the 3rd visit he acted like he didn't know me and was talking about someone else. I was seeing him for possible Trigeminal Neuralgia. That was a strange visit.
He told me that I was wasting my time coming to him and that I was taking Copaxone away from people who really needed it. Since when is there a Copaxone shortage? I was quite sick the day I saw him and had a lot of pain in my head and he didn't help my mood or pain level at all. He told me I didn't have TM.
I told him I wanted to stay on Copaxone because he hadn't proved to me that it wasn't MS. I reminded him of my previous visits and what he had said and he looked at the ceiling and rolled his eyes...how rude! He had a lot of other things to say that I thought were really bizarre and I won't take up space writing about it.
In May or late April I started with a low grade fever that wouldn't quit. Finally, I went to a rheumatologist that told me as my sed rate was 129, that I had Poly Myalgia Rheumatica and that I needed a biopsy of the arteries in my head as my symptoms in my head were really strange. I've been on steroids since July and am weaning off them.
Copaxone, I think, and the MS nurse, and the Pharmacist also think that the med is doing it's job. Why can't neuros be so encouraging?
The pharmacist also told me that many people who take oral steroids and Copaxone at the same time seem to have good results.
I think this last year has been about me getting stronger and not taking to heart what is told to me. I've been working hard on this and it is getting better. I really realize in a new way that I must remain my own advocate. These people that see us for 15 minutes are not experts on our lives and bodies.
So, for 2010...who knows.
On the second visit he prescribed Copaxone and on the 3rd visit he acted like he didn't know me and was talking about someone else. I was seeing him for possible Trigeminal Neuralgia. That was a strange visit.
He told me that I was wasting my time coming to him and that I was taking Copaxone away from people who really needed it. Since when is there a Copaxone shortage? I was quite sick the day I saw him and had a lot of pain in my head and he didn't help my mood or pain level at all. He told me I didn't have TM.
I told him I wanted to stay on Copaxone because he hadn't proved to me that it wasn't MS. I reminded him of my previous visits and what he had said and he looked at the ceiling and rolled his eyes...how rude! He had a lot of other things to say that I thought were really bizarre and I won't take up space writing about it.
In May or late April I started with a low grade fever that wouldn't quit. Finally, I went to a rheumatologist that told me as my sed rate was 129, that I had Poly Myalgia Rheumatica and that I needed a biopsy of the arteries in my head as my symptoms in my head were really strange. I've been on steroids since July and am weaning off them.
Copaxone, I think, and the MS nurse, and the Pharmacist also think that the med is doing it's job. Why can't neuros be so encouraging?
The pharmacist also told me that many people who take oral steroids and Copaxone at the same time seem to have good results.
I think this last year has been about me getting stronger and not taking to heart what is told to me. I've been working hard on this and it is getting better. I really realize in a new way that I must remain my own advocate. These people that see us for 15 minutes are not experts on our lives and bodies.
So, for 2010...who knows.
