Aa
My first visit with my new MS Neurologist today!
She is very warm, very good at explaining things and I immediately felt comfortable with her. I told her my story about the last 2 years and she asked a number of questions to clarify things. Then she got down to the business of looking at my MRI of the Brain.
She showed me the lesion (yes - she called it that!!!) on my corpus callosum and said that there are very few things that would be seen in that part of the brain - a tumor, which it isn't, and an MS lesion....okay folks, we need to take a moment to let that sink in.... I have seen 2 neurologists prior to her - the first one (who ordered the MRI to rule out MS) told me that the MRI was "Normal".....the second (at the Mayo clinic) - he said the MRI "looked fine".
She said that because of the symptoms, and the lesion - MS should be highly suspected. She wants another MRI of the Brain (it has been a year since my last) so that she can get a better look at the lesion - also to see if anything else has changed. She said she wanted to have the MRI done on the highest machine, a 3T!!! She also put instructions to the radiologist to try to "slice" the images so that the lesion is more easily seen.
She also wants to do a lumbar puncture - she said that if the lumbar puncture comes back with "immunologic mischief" (yes she said mischief!! I had to keep myself from laughing..it sounded so cute) then we have even more evidence that points towards MS.
She said that the lumbar puncture could be normal - as it is in a lot of MS patients - but it is worth doing to see if there is a possiblity for more hard evidence. She said that they are seeing more and more with MS a mismatch of symptoms vs. lesions or physical evidence (meaning "normal" test results)..or lots of lesions but no symptoms.
She said that once she has seen the new MRI - if there are major changes (new lesions) then we may not need to do the lumbar puncture for a diagnosis. If the MRI is unchanged, then the lumbar puncture will be next.
She wants to "finish our discussion and come up with a plan of attack" after she sees the new MRI. So I see her again in 3 weeks.
I am hopeful - yet scared at what this means for me. I could have a diagnosis of MS 3 weeks from now....or not...
Whether it is a firm diagnosis, or a monitoring type of thing - I finally feel like I have 2 great doctors who are going to help me (my MS neuro and my Internist, who referred me to the MS Neuro)!!!
Not bad for a Monday!!!
Chrisy
She showed me the lesion (yes - she called it that!!!) on my corpus callosum and said that there are very few things that would be seen in that part of the brain - a tumor, which it isn't, and an MS lesion....okay folks, we need to take a moment to let that sink in.... I have seen 2 neurologists prior to her - the first one (who ordered the MRI to rule out MS) told me that the MRI was "Normal".....the second (at the Mayo clinic) - he said the MRI "looked fine".
She said that because of the symptoms, and the lesion - MS should be highly suspected. She wants another MRI of the Brain (it has been a year since my last) so that she can get a better look at the lesion - also to see if anything else has changed. She said she wanted to have the MRI done on the highest machine, a 3T!!! She also put instructions to the radiologist to try to "slice" the images so that the lesion is more easily seen.
She also wants to do a lumbar puncture - she said that if the lumbar puncture comes back with "immunologic mischief" (yes she said mischief!! I had to keep myself from laughing..it sounded so cute) then we have even more evidence that points towards MS.
She said that the lumbar puncture could be normal - as it is in a lot of MS patients - but it is worth doing to see if there is a possiblity for more hard evidence. She said that they are seeing more and more with MS a mismatch of symptoms vs. lesions or physical evidence (meaning "normal" test results)..or lots of lesions but no symptoms.
She said that once she has seen the new MRI - if there are major changes (new lesions) then we may not need to do the lumbar puncture for a diagnosis. If the MRI is unchanged, then the lumbar puncture will be next.
She wants to "finish our discussion and come up with a plan of attack" after she sees the new MRI. So I see her again in 3 weeks.
I am hopeful - yet scared at what this means for me. I could have a diagnosis of MS 3 weeks from now....or not...
Whether it is a firm diagnosis, or a monitoring type of thing - I finally feel like I have 2 great doctors who are going to help me (my MS neuro and my Internist, who referred me to the MS Neuro)!!!
Not bad for a Monday!!!
Chrisy
hi legend, You may not know that you have posted on a very old post (from 2009) and many people won't even look at what you have written. Would you do us the favor and start a brand new post with your introduction and question? There are lots of people here willing to help out.
As for your question - I will give you my experience with the LP cost. Mine was done in the neurologist's office with no problems, I do have insurance, and my out of pocket cost was under $50. The insurance companies negotiate a reduced contract rate for all of these services and then I pay only 10% of what the insurance company agreed to. You and your friend should definitely talk to the place where this will be done and ask for the cash rate - explain the lack of insurance and negotiate what you are able to pay.
If you have this done at a hospital, the costs could be a whole lot more. There is absolutely nothing wrong with telling the doctor about these money concerns and ask the facility BEFORE you have the LP done what the costs will bbe. Good luck and I hope we will see you around, Lulu
As for your question - I will give you my experience with the LP cost. Mine was done in the neurologist's office with no problems, I do have insurance, and my out of pocket cost was under $50. The insurance companies negotiate a reduced contract rate for all of these services and then I pay only 10% of what the insurance company agreed to. You and your friend should definitely talk to the place where this will be done and ask for the cash rate - explain the lack of insurance and negotiate what you are able to pay.
If you have this done at a hospital, the costs could be a whole lot more. There is absolutely nothing wrong with telling the doctor about these money concerns and ask the facility BEFORE you have the LP done what the costs will bbe. Good luck and I hope we will see you around, Lulu
Hi googysmom1. My friend has problems and he think it's MS. He doesnt have insurance and looks like he will have to pay for d test. I was wondering if you know the price for lumbar tap/puncture & a blood graph be done as a confirmatory diagnosis , just approximate ?
We would really appreciate for this information.
Thank u in advance
Nads
We would really appreciate for this information.
Thank u in advance
Nads
Very happy for you Chrisy!
She is a keeper!
We're grateful for you too, Chrisy.
(((hugs)))
shell
She is a keeper!
We're grateful for you too, Chrisy.
(((hugs)))
shell
I have been a bit slow in picking this up but ditto to everything everyone has said.
As someone who got the final dx only a month ago just take care of yourself as the hunt for answers spurs you on and when you are in limbo the only thing you can think about is getting a dx.
No one can prepare you for the final dx but I am sure it is coming your way soon. Hold tight and take your friends with you on the ride.
Thinking of you.
(((hugs)))
Pat
As someone who got the final dx only a month ago just take care of yourself as the hunt for answers spurs you on and when you are in limbo the only thing you can think about is getting a dx.
No one can prepare you for the final dx but I am sure it is coming your way soon. Hold tight and take your friends with you on the ride.
Thinking of you.
(((hugs)))
Pat
Thank you so much for your opinion about my new neuro - it means a lot to know that you think she is a keeper, like I do.
One of the statements that she made to me was that "when everything else has been ruled out, we must consider MS" made me think of you & how many times I have heard on this forum about how MS is a diagnosis of exclusion.
She took a lot of time to show me the lesion & explain why it was only seen in one view on the MRI, because of the size of the "slices" and why she wanted to get a better look at it. She also was very surprised at how all of the other doctors, not just the neuros ignored my neurological symptoms and focused on my GI symptoms only.
When I told her that the first neuro thought I was possibly having "sensory seizures", she told me "that is not even something that I would consider as a diagnosis, considering your symptoms, the way the symptoms have progressed and the lesion".
I left my appointment with her, in a good mood, which is weird, because nobody wants a diagnosis of MS or any other chronic disease, but I finally felt like I was being heard and understood - for the first time since all of this began for me and I felt validated. That made me feel so good.
Reality is beginning to set in, that I may very well be diagnosed with MS, but I am of the mindset that I just want to know what is wrong with me so that I can just get on with treatment and LIFE! Limbo is not a great place to be - as many on this forum know - but with knowledge comes power!
Thank you for your honesty about adjusting my thinking towards "having MS" rather than "possibly having MS". I am thinking about it - but I don't really know how to prepare myself for the reality of it, so I will keep thinking about it and hopefully when/if the news comes I will be ready. :)
I am so glad I found this forum - I feel so lucky to have such a great place to come to.
Chrisy
One of the statements that she made to me was that "when everything else has been ruled out, we must consider MS" made me think of you & how many times I have heard on this forum about how MS is a diagnosis of exclusion.
She took a lot of time to show me the lesion & explain why it was only seen in one view on the MRI, because of the size of the "slices" and why she wanted to get a better look at it. She also was very surprised at how all of the other doctors, not just the neuros ignored my neurological symptoms and focused on my GI symptoms only.
When I told her that the first neuro thought I was possibly having "sensory seizures", she told me "that is not even something that I would consider as a diagnosis, considering your symptoms, the way the symptoms have progressed and the lesion".
I left my appointment with her, in a good mood, which is weird, because nobody wants a diagnosis of MS or any other chronic disease, but I finally felt like I was being heard and understood - for the first time since all of this began for me and I felt validated. That made me feel so good.
Reality is beginning to set in, that I may very well be diagnosed with MS, but I am of the mindset that I just want to know what is wrong with me so that I can just get on with treatment and LIFE! Limbo is not a great place to be - as many on this forum know - but with knowledge comes power!
Thank you for your honesty about adjusting my thinking towards "having MS" rather than "possibly having MS". I am thinking about it - but I don't really know how to prepare myself for the reality of it, so I will keep thinking about it and hopefully when/if the news comes I will be ready. :)
I am so glad I found this forum - I feel so lucky to have such a great place to come to.
Chrisy
Whoooopppieeeee!
Wow, this is the third congratulatory post tonight! You found a winner, not because she made the diagnosis of MS - though I don't think that was a stretch, but because you had the benefit of her entire attention, compassion and education. She can see right here and now that the pattern of symptoms and exam findings, plus the lesion in the corpus callosum, add up pretty quickly to MS and not to many other things.
Her approach seems solid also. It is totally appropriate to reimage the brain and cord and see what might have changed. Also, if the new MRI provides more confirmatory info she knows that an LP is not mandatory. And she states what we already know, but a lot of neuros do not - THAT AN LP CAN BE NEGATIVE AND IT DOES NOT CHANGE THE DIAGNOSIS OF MS!
You are in good hands here. I felt so bad for you after your dismal experience with the Mayo in Phoenix. It appears to me that she has made the diagnosis of presumptive MS - and likely of just MS, so I think you are already diagnosed. She just wants to see what has changed in the last year. The next visit will be talking about what to do.
I found her remark about the growing mismatch between symptoms and lesions to be interesting. Clearly she does not shrink from diagnosing MS when one or the other is "atypical." I bet she doesn't often throw people out into the cold land of limbo with a nebulous "diagnosis" of "Demyelinating Disease."
So, I think you need to begin adjusting your thinking. You know that we are here for you no matter how all this goes.
Quix
Wow, this is the third congratulatory post tonight! You found a winner, not because she made the diagnosis of MS - though I don't think that was a stretch, but because you had the benefit of her entire attention, compassion and education. She can see right here and now that the pattern of symptoms and exam findings, plus the lesion in the corpus callosum, add up pretty quickly to MS and not to many other things.
Her approach seems solid also. It is totally appropriate to reimage the brain and cord and see what might have changed. Also, if the new MRI provides more confirmatory info she knows that an LP is not mandatory. And she states what we already know, but a lot of neuros do not - THAT AN LP CAN BE NEGATIVE AND IT DOES NOT CHANGE THE DIAGNOSIS OF MS!
You are in good hands here. I felt so bad for you after your dismal experience with the Mayo in Phoenix. It appears to me that she has made the diagnosis of presumptive MS - and likely of just MS, so I think you are already diagnosed. She just wants to see what has changed in the last year. The next visit will be talking about what to do.
I found her remark about the growing mismatch between symptoms and lesions to be interesting. Clearly she does not shrink from diagnosing MS when one or the other is "atypical." I bet she doesn't often throw people out into the cold land of limbo with a nebulous "diagnosis" of "Demyelinating Disease."
So, I think you need to begin adjusting your thinking. You know that we are here for you no matter how all this goes.
Quix
Had my 3T MRI today - man was it loud!!! They had headphones for me, but no music - so I had to hear the bang, bang, thump, thump in all it's glory!
Will see the MS neuro on August 6th to see if there is anything new on the MRI.
Chrisy
Will see the MS neuro on August 6th to see if there is anything new on the MRI.
Chrisy
What a blessing that you've found such a caring and compassionate doctor! Definitely hold on to her.
Please keep updating. I pray that you get all the help you need!
Take care!
Please keep updating. I pray that you get all the help you need!
Take care!
Chrisy, I'm so happy you found someone who finally makes sense! I hope you get answers soon, so you can get yourself the care you need!
Cheers,
Guitar_grrrl
Cheers,
Guitar_grrrl
I would be happy to share her information with you, she is in Seattle, so not too far for you! I will definitely keep everyone updated!
Hugs,
Chrisy
Hugs,
Chrisy
I'm so glad you found someone like her, she sounds like a very good Neuro... I would love to see her if I don't get answer up here in Vancouver... it's not that far away. I also have two lesions (tiny) in the corpus callosum and other places.. still waiting for answers.
keep us updated on how things are going.. try not too worry to much.. and it's good too hear.... you should get some answers...YAH... :)
take care
wobbly
undx
keep us updated on how things are going.. try not too worry to much.. and it's good too hear.... you should get some answers...YAH... :)
take care
wobbly
undx
Yeah - the 3 week follow up was only so that I had enough time to get the MRI scheduled & completed! I feel very fortunate to have found her.
I agree about the scary parts not being so scary when we have the wonderful people here on the forum who can help us.
Hugs,
Chrisy
I agree about the scary parts not being so scary when we have the wonderful people here on the forum who can help us.
Hugs,
Chrisy
I feel so fortunate that I have found this doctor. I am a little surprised at how happy I have been since leaving her office today - given what I may be facing in terms of a possible diagnosis. I think it comes from finally feeling like I am on the right path - instead of feeling like maybe I am just crazy!!! :)
There are so few people in my life right now who are really supportive of what I have been going through with these health issues, but I know that I have this forum & everyone here to support, guide and educate me - I am so thankful for that!
Hugs,
Chrisy
There are so few people in my life right now who are really supportive of what I have been going through with these health issues, but I know that I have this forum & everyone here to support, guide and educate me - I am so thankful for that!
Hugs,
Chrisy
Ah, she had me at waiting until the MRI results are back before doing the LP, not that she didn't sound like a peach before that!
A follow up visit in 3 weeks! Wow. I'm so very happy for you; sounds like things are looking up!
Even the scary parts aren't so scary with all the wonderful people here. I
Awesome Monday!
Kathy
A follow up visit in 3 weeks! Wow. I'm so very happy for you; sounds like things are looking up!
Even the scary parts aren't so scary with all the wonderful people here. I
Awesome Monday!
Kathy
Thank you for your kind words! They mean so much to me!
I will be scheduling the new MRI today - and will try not to worry... :) I asked her about MS Protocol for the MRI & she said that she always does them that way! Another great thing about her!!
I am so thankful to have this forum!!
I will keep you posted.
Chrisy
I will be scheduling the new MRI today - and will try not to worry... :) I asked her about MS Protocol for the MRI & she said that she always does them that way! Another great thing about her!!
I am so thankful to have this forum!!
I will keep you posted.
Chrisy
Wow, double WOW!! It looks like the 3rd neuro was the charm. I am so hopeful for you now that you have someone taking you and your illness seriously.
She sounds like she is really on the ball. She's ordering a 3T!!!! She's going to wait to see the results before doing an LP in case there's enough evidence in the MRI to do the diagnosis. What more can you ask for. She sounds like a gem.
If after this is all over and you do end up with an MS diagnosis, try not to be too afraid even though that is kind of hard at first because there are so many who can help you. For example, several of us including myself are newies to the diagnosis and I can tell you that the rest of the gang, MSers and Limbolanders are so helpful and caring that you will not feel alone.
Thanks for sharing this "excellent" neuro appointment with us.
Wishing you the best.
Julie
She sounds like she is really on the ball. She's ordering a 3T!!!! She's going to wait to see the results before doing an LP in case there's enough evidence in the MRI to do the diagnosis. What more can you ask for. She sounds like a gem.
If after this is all over and you do end up with an MS diagnosis, try not to be too afraid even though that is kind of hard at first because there are so many who can help you. For example, several of us including myself are newies to the diagnosis and I can tell you that the rest of the gang, MSers and Limbolanders are so helpful and caring that you will not feel alone.
Thanks for sharing this "excellent" neuro appointment with us.
Wishing you the best.
Julie
Grab that doctor and don't let her go. She is the kind of doctor we all want to see more of, out there in the medical world. She's a definite keeper. I am so glad you found her.
Try not to worry yourself to death until the next MRI is done. What shows up or doesn't show up, you can't change by worrying yourself. You hear? Have some faith, that this doctor is going to keep looking for answers, until she finds out what is going on. She may diagnose you, with just one lesion. One of our other members was diagnosed with one lesion, when her physical exam and symptoms added up to just one thing - MS!
Lesion(s) that show up in the Corpus Callosum are a classic area for MS to attack. That's an area that is near fluid and lesions love fluid. Not all known MS lesions are found in areas of fluid, so don't take that statement wrong.
I would expect that if you have had any "symptoms" of more trouble in the past year, that the MRI will show that. My MRI's of many years ago, didn't change for 5 years. The same 5-7 lesions in the brain and one in the spine, remained there, until heck let loose. I was NOT stable during that time, so I do not know why different lesions or changes weren't seen. That was in the days of weaker MRI's.
Hope your Neuro writes up the MRI order, stating, "Possible MS." Use MS Protocol. That tells the techs to do thinner slices and different angles on MRI and with and without contrast dye. It sounds like your doctor is smart enough to order your MRI's using MS Protocol. When the protocol is used, your films should be read by a neuroradiologist, who is well trained to read these kinds of films, when it's involving MS suspect.
Keep us informed and don't worry yourself..okay? We'll be here for you...
Best Wishes,
Heather
Try not to worry yourself to death until the next MRI is done. What shows up or doesn't show up, you can't change by worrying yourself. You hear? Have some faith, that this doctor is going to keep looking for answers, until she finds out what is going on. She may diagnose you, with just one lesion. One of our other members was diagnosed with one lesion, when her physical exam and symptoms added up to just one thing - MS!
Lesion(s) that show up in the Corpus Callosum are a classic area for MS to attack. That's an area that is near fluid and lesions love fluid. Not all known MS lesions are found in areas of fluid, so don't take that statement wrong.
I would expect that if you have had any "symptoms" of more trouble in the past year, that the MRI will show that. My MRI's of many years ago, didn't change for 5 years. The same 5-7 lesions in the brain and one in the spine, remained there, until heck let loose. I was NOT stable during that time, so I do not know why different lesions or changes weren't seen. That was in the days of weaker MRI's.
Hope your Neuro writes up the MRI order, stating, "Possible MS." Use MS Protocol. That tells the techs to do thinner slices and different angles on MRI and with and without contrast dye. It sounds like your doctor is smart enough to order your MRI's using MS Protocol. When the protocol is used, your films should be read by a neuroradiologist, who is well trained to read these kinds of films, when it's involving MS suspect.
Keep us informed and don't worry yourself..okay? We'll be here for you...
Best Wishes,
Heather
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