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PCP Advises Second Opinion
I love the people and the knowledge, humor, personal experiences shared with this forum.
Bit of a rant to follow. Please don't fall asleep.
I hate trying to navigate this forum, (can you tell the mood I'm in?). Just recently, there was a post about seeking second opinions. I wanted to add to that, but I would have been up until the wee hours of the morning trying to find it.
So I'm just going to have to clog the search engine with yet another post that includes "second opinion".
WAKE UP NOW!!! I'm done with my rant.
In any event, I posted last week about a 6 mo. follow up MRI of the brain that shows further progression with brain lesions. Quix posted last on the topic with suggestions for a follow up appt.
I contacted my PCP by fax asking for an appt with her to strategize for the next appt. She called me today. In her opinion, she recommends that I seek a second opinion. Her rationale is that reading the neuro's reports, the doc seems to have pretty much excluded perusing the lesions further and is more focused on degenerative disc disease, in spite of sx that have nothing to do with spinal cord damage.
Did send a fax to the neuro today, asking to move up the appt from Feb. Will see what kind of response I get to that. What is frustrating for me is that this neuro specializes in demyelinating disease and MS.
I'll put up a separate post targeted to people in CT to try to find a good neuro here. If you read this and you're in CT with a neuro that you recommend, please send me a PM.
I'm beyond tired, as well as frustrated and yes, on top of that, concerned with what is happening to what once used to be a beautiful brain.
I knew this wasn't going to be easy, but still am disappointed in the medical profession. At least my PCP takes me seriously.
Audrey
Bit of a rant to follow. Please don't fall asleep.
I hate trying to navigate this forum, (can you tell the mood I'm in?). Just recently, there was a post about seeking second opinions. I wanted to add to that, but I would have been up until the wee hours of the morning trying to find it.
So I'm just going to have to clog the search engine with yet another post that includes "second opinion".
WAKE UP NOW!!! I'm done with my rant.
In any event, I posted last week about a 6 mo. follow up MRI of the brain that shows further progression with brain lesions. Quix posted last on the topic with suggestions for a follow up appt.
I contacted my PCP by fax asking for an appt with her to strategize for the next appt. She called me today. In her opinion, she recommends that I seek a second opinion. Her rationale is that reading the neuro's reports, the doc seems to have pretty much excluded perusing the lesions further and is more focused on degenerative disc disease, in spite of sx that have nothing to do with spinal cord damage.
Did send a fax to the neuro today, asking to move up the appt from Feb. Will see what kind of response I get to that. What is frustrating for me is that this neuro specializes in demyelinating disease and MS.
I'll put up a separate post targeted to people in CT to try to find a good neuro here. If you read this and you're in CT with a neuro that you recommend, please send me a PM.
I'm beyond tired, as well as frustrated and yes, on top of that, concerned with what is happening to what once used to be a beautiful brain.
I knew this wasn't going to be easy, but still am disappointed in the medical profession. At least my PCP takes me seriously.
Audrey
Hey Audrey... my pcp also sent me for a Second Opinion
The first neuro was an MS specialist who told me I "had a few small dots nothing to worry about" Unless I was dragging my legs she did not even want to hear me.
my Gp did not agree and sent me to see another MS specialist ...He took one look at the mri and listened to my symptoms and said he wanted to run his own tests but he was 99% sure it was ms....one important reason was that one of the lesions was in the corpus callosum...I dont think there are to many other things the lesions can be when they are in the corpus callosum.
I would get your Second Opinion......... Im glad I did ....when I went back he told me I had rrms and I was able to start treatment early..I am on copaxone for 3 months now.
Good luck and please let me know how you are doing....xoxo Linda
The first neuro was an MS specialist who told me I "had a few small dots nothing to worry about" Unless I was dragging my legs she did not even want to hear me.
my Gp did not agree and sent me to see another MS specialist ...He took one look at the mri and listened to my symptoms and said he wanted to run his own tests but he was 99% sure it was ms....one important reason was that one of the lesions was in the corpus callosum...I dont think there are to many other things the lesions can be when they are in the corpus callosum.
I would get your Second Opinion......... Im glad I did ....when I went back he told me I had rrms and I was able to start treatment early..I am on copaxone for 3 months now.
Good luck and please let me know how you are doing....xoxo Linda
Am going to have to find another neuro. What about the McDonald criteria? I have at least 9 hyperintense lesions, juxtacortical lesions and well beyond 3 in the periventricular region. As she says location doesn't matter. I wish that I had been faster in thinking to that response.
At the same time, I do want the Lumbar MRI done before I consult someone about my back, so I do need to be diplomatic.
GRRRR.
Audrey
At the same time, I do want the Lumbar MRI done before I consult someone about my back, so I do need to be diplomatic.
GRRRR.
Audrey
Neuro called me this morning.
She's going to order an MRI of my lumbar spine and wants me to go to the Spine Clinic at Yale.
She's also going to re-run a comprehensive panel of blood tests and then wants me to see a rheumatologist.
As for the MRI's, she was looking at them while on the phone with me. She thinks that the differences are minor and may be due to different positioning between the MRI's. She did confirm that I have juxtacortical lesions. I asked what else could cause these and lesions on the corpus callosum. She was vague and said that it's not always location.
Since I just restarted this journey 6 months ago, I don't think that it is time to take a break yet.
Audrey
She's going to order an MRI of my lumbar spine and wants me to go to the Spine Clinic at Yale.
She's also going to re-run a comprehensive panel of blood tests and then wants me to see a rheumatologist.
As for the MRI's, she was looking at them while on the phone with me. She thinks that the differences are minor and may be due to different positioning between the MRI's. She did confirm that I have juxtacortical lesions. I asked what else could cause these and lesions on the corpus callosum. She was vague and said that it's not always location.
Since I just restarted this journey 6 months ago, I don't think that it is time to take a break yet.
Audrey
"Stupid is as stupid does" is one of my favorite quotes!!!!
Sorry you are having a tough time getting answers. Took me 6 neuros to find my "gem". It was worth sifting through the dirt to find my gem.
As for your "beautiful brain" , it is still thee and functioning very well. I would love to be as articulate as you are and have the ability I once had to express my self eloquently not "Quayle style".
Hang in there. It stook 5 years and those wasted 5 neuros to get my answer. It IS worth the wait and the frustration. Red is correct in "taking a break " even for a short time to regroup and collect oneself .
Ren
Sorry you are having a tough time getting answers. Took me 6 neuros to find my "gem". It was worth sifting through the dirt to find my gem.
As for your "beautiful brain" , it is still thee and functioning very well. I would love to be as articulate as you are and have the ability I once had to express my self eloquently not "Quayle style".
Hang in there. It stook 5 years and those wasted 5 neuros to get my answer. It IS worth the wait and the frustration. Red is correct in "taking a break " even for a short time to regroup and collect oneself .
Ren
Yes, he WAS addressing the NAACP when he spoke that infamous line. Poor bloke. Rich and brainless - yet we put him second in line to the presidency.
Quix
Quix
Thanks for your comment about the brain.
To quote someone who, in my opinion, never had a brain:
"What a waste it is to lose one's mind. Or not to have a mind is being very wasteful. How true that is."
Dan Quayle
Misquoting the NAACP "A mind is a terrible thing to waste", lamenting the fact that so many black youth don't have the opportunity for higher education.
If I recall correctly, this man said this in a speech to the NAACP. I guess he was referring to himself in the second sentence.
My brain still functions better than that. As Forrest Gump would say "Stupid is as stupid does."
LOL
Audrey
To quote someone who, in my opinion, never had a brain:
"What a waste it is to lose one's mind. Or not to have a mind is being very wasteful. How true that is."
Dan Quayle
Misquoting the NAACP "A mind is a terrible thing to waste", lamenting the fact that so many black youth don't have the opportunity for higher education.
If I recall correctly, this man said this in a speech to the NAACP. I guess he was referring to himself in the second sentence.
My brain still functions better than that. As Forrest Gump would say "Stupid is as stupid does."
LOL
Audrey
Here's my tip - if there is a thread you want to add to later - click on the box at the bottom left side of the last comment box "Add to watch list" and it gets added to your list. you can then quickly scan your watch list for the post you want.
As for the neuro - if your PCP is not impresssed with what she has received and thinks you should seek a 2nd opinion, then by all means do it. It sounds like you have doubts too, so take advantage of the time between now and February and find that 2nd!
good luck, Lulu
As for the neuro - if your PCP is not impresssed with what she has received and thinks you should seek a 2nd opinion, then by all means do it. It sounds like you have doubts too, so take advantage of the time between now and February and find that 2nd!
good luck, Lulu
Audrey,
First, I am so sorry that you are going through all of this. It has taken me a while to figure out this site. I am still learning. As far as finding a thread, people have always helped with that when you ask.
The fact that this neuro is an MS specialist doesn't mean he is right.
It is so frustrating and disappointing. Going from doctor to doctor takes an incredible amount of energy. I know how hard this is!
Can you take a break and rest for a while? Even just a few days.
I'm sorry that your brain is worsening. It is such a loss.
XXXXXXXOOOOO
Red
First, I am so sorry that you are going through all of this. It has taken me a while to figure out this site. I am still learning. As far as finding a thread, people have always helped with that when you ask.
The fact that this neuro is an MS specialist doesn't mean he is right.
It is so frustrating and disappointing. Going from doctor to doctor takes an incredible amount of energy. I know how hard this is!
Can you take a break and rest for a while? Even just a few days.
I'm sorry that your brain is worsening. It is such a loss.
XXXXXXXOOOOO
Red
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