Aa
Approved for MRI
I finally got the authorization numbers for the MRI of brain, cspine and thoracic spine but "without" contrast. Isn't that a hoot?
Does anyone know if it will make a difference?
Lisa
Does anyone know if it will make a difference?
Lisa
Thank you all for taking the time to read and answer with such compassion. Truly, I don't know what I would do without you all here. You help me maintain my sanity.
I called my MS Specialist today and informed the NP that my myoclonus was really bad today and my gait was very unsteady. In fact, I told her that it was the worst I've ever had. She said she would inform him and call me back.
Three hours later she calls and says that he can see me on Thursday. I told her that I was going to have a TEE performed to rule out the possibility of PFO (TIA) -- which I don't think I have anyways, but to shut them up about it, I suppose I must do it.
So she penciled me in for Friday. Granted, one would think he would want to see what was going on with me "today" and not 3 days later. Odd don't you think? Oh well.
Again, thank you all.
Lisa
I called my MS Specialist today and informed the NP that my myoclonus was really bad today and my gait was very unsteady. In fact, I told her that it was the worst I've ever had. She said she would inform him and call me back.
Three hours later she calls and says that he can see me on Thursday. I told her that I was going to have a TEE performed to rule out the possibility of PFO (TIA) -- which I don't think I have anyways, but to shut them up about it, I suppose I must do it.
So she penciled me in for Friday. Granted, one would think he would want to see what was going on with me "today" and not 3 days later. Odd don't you think? Oh well.
Again, thank you all.
Lisa
(((Lisa)))
Do I need to come down and kick some doctor butt. I'm little but I can take 'em! ;) Better yet, we can have the MS posse' make a road trip. :)
In all seriousness, there are so many of us in the same boat here. You know we 'get it' and support you in whatever *you* need to do to get through this. I see signs this is starting to get to me - some days I want to bury my head in the sand, other days I'm upset. A year or more of not feeling good and frustated no-one knows what's wrong, doctor's saying the wrong things well, it's hard to fight the disappointment of it all. Then, giving up is hard as when we don't feel well we worry that giving up will cause more damage. It's just hard to balance it all. We are tired, feel alone at times and lost on which way is up. Hang in there girl. We can do this. I know we can!
That said, I decided to go outside my area (county) for my next opinion. I feel that the doctor to doctor loyalties might be causing some issues based on a comment from my last Neuro. I'm not interested in doctor's who aren't willing to listen to me or take my concerns into account where they just read reports and tell me that there is nothing wrong either.
So, I went through two separate major hospitals doctors profiles and called each of the nurses to talk about which doctor might be a better fit for me. Shell gave me some doctor/hospital review sites as well. I interviewed the nurse and picked my doctor based on what I was looking for.
I think it's time to say "NEXT!!!", kick these podunks to the curb and to take care of you,
~Barb
Do I need to come down and kick some doctor butt. I'm little but I can take 'em! ;) Better yet, we can have the MS posse' make a road trip. :)
In all seriousness, there are so many of us in the same boat here. You know we 'get it' and support you in whatever *you* need to do to get through this. I see signs this is starting to get to me - some days I want to bury my head in the sand, other days I'm upset. A year or more of not feeling good and frustated no-one knows what's wrong, doctor's saying the wrong things well, it's hard to fight the disappointment of it all. Then, giving up is hard as when we don't feel well we worry that giving up will cause more damage. It's just hard to balance it all. We are tired, feel alone at times and lost on which way is up. Hang in there girl. We can do this. I know we can!
That said, I decided to go outside my area (county) for my next opinion. I feel that the doctor to doctor loyalties might be causing some issues based on a comment from my last Neuro. I'm not interested in doctor's who aren't willing to listen to me or take my concerns into account where they just read reports and tell me that there is nothing wrong either.
So, I went through two separate major hospitals doctors profiles and called each of the nurses to talk about which doctor might be a better fit for me. Shell gave me some doctor/hospital review sites as well. I interviewed the nurse and picked my doctor based on what I was looking for.
I think it's time to say "NEXT!!!", kick these podunks to the curb and to take care of you,
~Barb
Hi Lisa-
I am so sorry to hear about your situation- I am pretty new to this forum, and I think you will find it to be a lifeline in times of discouragement and fear. There are many knowledgeable and compassionate folks here who have made me feel welcome, and there is a wealth of knowledge in the different threads.
I hope you are able to get to a new neurologist, I think that is key for you. It seems that all too many of them are quick to write off legitimate concerns, but there are good, compassionate doctors out there, and as I am researching them in my neck of the woods, I hope you will press on and find someone who will truly take the time to listen to you and your history. Obviously there is something going on neurologically, and as I have discovered, many many people go through long periods of time before being definitively dx'd. Keep your chin up, and visit this community often- it is such an encouraging place :)
My prayers are with you!
Becca
I am so sorry to hear about your situation- I am pretty new to this forum, and I think you will find it to be a lifeline in times of discouragement and fear. There are many knowledgeable and compassionate folks here who have made me feel welcome, and there is a wealth of knowledge in the different threads.
I hope you are able to get to a new neurologist, I think that is key for you. It seems that all too many of them are quick to write off legitimate concerns, but there are good, compassionate doctors out there, and as I am researching them in my neck of the woods, I hope you will press on and find someone who will truly take the time to listen to you and your history. Obviously there is something going on neurologically, and as I have discovered, many many people go through long periods of time before being definitively dx'd. Keep your chin up, and visit this community often- it is such an encouraging place :)
My prayers are with you!
Becca
GAD contrast does not help to show lesions. Demyelinating lesions show up on T2, STIR and FLAIR (so called inversion) sequences. GAD shows up on T1 sequences. GAD allows the doctor to see when the Blood Brain Barrier is leaking GAD from the vascular system into the brain tissue.
This happens in some "active" lesions. It seems to mean that not only GA but other lhing from the vascular system, like white blood cells, are also leaking into the brain. Most T1 enhancing lesions are considered less than 40 day old (although there is evidence that the damage may start well before the lesion forms.)
Bob
This happens in some "active" lesions. It seems to mean that not only GA but other lhing from the vascular system, like white blood cells, are also leaking into the brain. Most T1 enhancing lesions are considered less than 40 day old (although there is evidence that the damage may start well before the lesion forms.)
Bob
*his* Late I guess.
I still can't believe the audacity of writing a four sentence report with a wrong patient history in it. What a lousy day. I'm really, really sorry about that.
We used to have roasts on this forum. I think this guy, no toad, deserves to be roasted!
I still can't believe the audacity of writing a four sentence report with a wrong patient history in it. What a lousy day. I'm really, really sorry about that.
We used to have roasts on this forum. I think this guy, no toad, deserves to be roasted!
I'd report this doctor. This just isn't right. The way the report read reveals that her emotions got in the way of her judgement. Phucking ridiculous.
Hi Lisa,
So very sorry for such a traumatic day... Your Neurologist had to ask you what your symptoms where? Did she even know you? lol... She had no right to be so rude about it or a better word would be hateful about it...
I'm pretty sure I would collect my things never to return to this so called doctor... Get up, put a smile on your face, dust your hind end off, and set out for your next adventure... You know we are here with you through all of it...
Keep us posted on what's next and take care...
I'll be praying,
Carol
So very sorry for such a traumatic day... Your Neurologist had to ask you what your symptoms where? Did she even know you? lol... She had no right to be so rude about it or a better word would be hateful about it...
I'm pretty sure I would collect my things never to return to this so called doctor... Get up, put a smile on your face, dust your hind end off, and set out for your next adventure... You know we are here with you through all of it...
Keep us posted on what's next and take care...
I'll be praying,
Carol
Hello.
Sorry about the experience. It boggles the mind when drs don't listen and then act surprised or defensive when challenged.
With an MRI I understand from the posts that the contrast helps to show the newer lesions. With my MRI I couldn't remember getting a shot even though the order said with contrast. I called the MRI department in the hospital. They were useless as all they would do is look at the report and say if it said with contrast it was. (and I and my insurance paid how much for this test - ugh) I asked how one could tell when looking at the MRI and the nurse/radiologist said that the change was subtle so I wouldn't notice it.
When I read the spine MRI it said with IV Gadioluim and I asked the dr about it because I was and am absolutely positive I did not have an IV during the MRI and two the hospital MRI staff was a waste of time. He stated that it didn't really matter because they saw what they needed to. All I can say is ugh.
Sorry about the experience. It boggles the mind when drs don't listen and then act surprised or defensive when challenged.
With an MRI I understand from the posts that the contrast helps to show the newer lesions. With my MRI I couldn't remember getting a shot even though the order said with contrast. I called the MRI department in the hospital. They were useless as all they would do is look at the report and say if it said with contrast it was. (and I and my insurance paid how much for this test - ugh) I asked how one could tell when looking at the MRI and the nurse/radiologist said that the change was subtle so I wouldn't notice it.
When I read the spine MRI it said with IV Gadioluim and I asked the dr about it because I was and am absolutely positive I did not have an IV during the MRI and two the hospital MRI staff was a waste of time. He stated that it didn't really matter because they saw what they needed to. All I can say is ugh.
Lisa, Im so sorry. You were so close only to be let down AGAIN. Please dont give up. You are worth every bit of energy you have to put into finding out what is going on with your body. You are a truly amazing person who helps so many people on this site and encourages everyone here. Now continue to try to help yourself and stay motivated...I know you are frustrated and have every right to be but dont quit...stay strong. My thoughts and prayers are with you.
All I can say is i am so sorry this happened to you.
It amazes me how patients have to walk on egg shells around these frigging doctors.
Why is it so difficult for them to accommodate us if the test is being payed for.
Why iOS it so hard to just say, maybe it will satisfy my patient if I use this test.
I wouldn't say phuck it. Because that would only hurt you in the long run.
I can identify with your frustration. Lately I have just been moving through life and trying not to think about illness. When the symptoms are bad I stop moving.
I havent been searching nearly as long as a lot of you so I guess its easier for me to say that.
All i am saying is that I feel for you and am here if you need.
You are very important on this forum. It wouldn't be as interesting without you.
Kerri
It amazes me how patients have to walk on egg shells around these frigging doctors.
Why is it so difficult for them to accommodate us if the test is being payed for.
Why iOS it so hard to just say, maybe it will satisfy my patient if I use this test.
I wouldn't say phuck it. Because that would only hurt you in the long run.
I can identify with your frustration. Lately I have just been moving through life and trying not to think about illness. When the symptoms are bad I stop moving.
I havent been searching nearly as long as a lot of you so I guess its easier for me to say that.
All i am saying is that I feel for you and am here if you need.
You are very important on this forum. It wouldn't be as interesting without you.
Kerri
Get this:
I go for my cervical and thoracic spine MRI today. (I had the brain MRI done on Friday and only one technique was in 3mm slices the remaining were 5mm. Axial and sagittal T1W, Axial T2 weighted, Axial and sagittal FLAIR, Axial GRE and Axial Diffusion weighted).
So I had a list techniques I wanted the MRI to be done for the cervical and thoracic spine:
Scout
No FLAIR
PD/T2 Spin Echo @ 3mm
Sag T1 SE
So the tech reads the small list and says, "I got to call the Neuroradiologist and ask her" I said, my requisition states to MS Protocol.....He said he had to call. So I wait 5 min.
He returns and says the Neuroradiologist wants to speak to me. The first thing she says is, "Did you request this?" I said, "Yes, please" She said, "For what? Who told you? Are you a radiologist?" I said, "For MS protocol and a "friend told me" and "no Im not a radiologist". She said, "We dont do that here and the machine doesnt do that. I suggest you go to your "friends" imaging center and have it done there or go somewhere else".
My mouth dropped open. I said, "Well Im sure this hospital or imaging place has "MS protocol" to follow." She responded, "I want you to go elsewhere if you're not happy with what you're getting because its going to be at 5mm slices the same as any other test you had." Then she inquired, "What symptoms do you have?" I told her I have had extreme fatigue for a year, paresthesias on one side, ataxia, fine motor coordination issues, gait issues, eye issues, incontinence issues, etc." I just gave the phone to the tech and just started to cry.
The tech felt really felt bad.
So all in all, my brain MRI report says that there's "No change in the scattered foci of the cerebral white matter signal abnormality. No brainstem or cerebellar lesion is seen. There is no cerebral volume loss. There is no hydrocephalus or midline shift" That's all he said on the report.
I laugh because it says HISTORY: MS, increase weakness and fatigue. (um not diagnosed with MS -- yet)
So there you have it.
I'm about two breaths away from saying "phuck it".
Lisa
I go for my cervical and thoracic spine MRI today. (I had the brain MRI done on Friday and only one technique was in 3mm slices the remaining were 5mm. Axial and sagittal T1W, Axial T2 weighted, Axial and sagittal FLAIR, Axial GRE and Axial Diffusion weighted).
So I had a list techniques I wanted the MRI to be done for the cervical and thoracic spine:
Scout
No FLAIR
PD/T2 Spin Echo @ 3mm
Sag T1 SE
So the tech reads the small list and says, "I got to call the Neuroradiologist and ask her" I said, my requisition states to MS Protocol.....He said he had to call. So I wait 5 min.
He returns and says the Neuroradiologist wants to speak to me. The first thing she says is, "Did you request this?" I said, "Yes, please" She said, "For what? Who told you? Are you a radiologist?" I said, "For MS protocol and a "friend told me" and "no Im not a radiologist". She said, "We dont do that here and the machine doesnt do that. I suggest you go to your "friends" imaging center and have it done there or go somewhere else".
My mouth dropped open. I said, "Well Im sure this hospital or imaging place has "MS protocol" to follow." She responded, "I want you to go elsewhere if you're not happy with what you're getting because its going to be at 5mm slices the same as any other test you had." Then she inquired, "What symptoms do you have?" I told her I have had extreme fatigue for a year, paresthesias on one side, ataxia, fine motor coordination issues, gait issues, eye issues, incontinence issues, etc." I just gave the phone to the tech and just started to cry.
The tech felt really felt bad.
So all in all, my brain MRI report says that there's "No change in the scattered foci of the cerebral white matter signal abnormality. No brainstem or cerebellar lesion is seen. There is no cerebral volume loss. There is no hydrocephalus or midline shift" That's all he said on the report.
I laugh because it says HISTORY: MS, increase weakness and fatigue. (um not diagnosed with MS -- yet)
So there you have it.
I'm about two breaths away from saying "phuck it".
Lisa
This is my primary care doctor who initially ordered the MRI w/without contrast and MS Protocol. She is the first one to diagnose me with MS. She was sure of it. She even prescribed Medrol packs for me during my times of multiple neurological symptoms and it helped. (took a few days or more though).
The MS Specialist based his decision on the diagnosis of "NOT" MS on the Neuro-opth's and the Urologist's consult, who both said my diplopia and blurred vision had nothing to do with a neurological deficit and he had no idea what my problem was and that it was pr transient. The urologist stated my urinary incontinence and urinary retention was anatomical and did the vaginal mesh surgery last month and also said it wasn't neurological. (yet the surgery didn't work ha ha -- all that and nothing changed).
On June 1st (the last time I saw him), the MS Specialist said, "I can safely say that you dont have MS". I'll see you in 3 or 4 months. He also stated that the lesions I have do not explain the symptoms I'm having. (Which I thought that is not always the case but hell what do I know).
Anyways, I think the primary now feels that since the MS Specialist feels it is not MS she has to think otherwise too?
The only reason why I asked for the MRI again with and without contrast according to MS Protocol is because the past two weeks I started feeling worse with the fatigue, paresthesias started acting up again, vertigo (new), the goose bumps in one leg and only anterior and my balance is worse. The primary didnt seem to have a problem with ordering it at first.
Now it seems that it is a problem and that she wrote in the clinical notes in the requisition form, "Rule out MS" and "MS protocol".
I sincerely hope they would at least not do the tumor protocol as they did when I was hospitalized in April. I would be very upset if they do.
I go for the brain MRI tomorrow. I'll see what the tech says. My Dr's office faxed a new requisition form to the imaging place so I do not know now if the "MS protocol" is on it anymore.
@ Kel1lost: I had multiple lesions in the frontal, parietal, temporal, periventricular areas that are documented by the neuroradiologist. I still don't have an answer.
I
The MS Specialist based his decision on the diagnosis of "NOT" MS on the Neuro-opth's and the Urologist's consult, who both said my diplopia and blurred vision had nothing to do with a neurological deficit and he had no idea what my problem was and that it was pr transient. The urologist stated my urinary incontinence and urinary retention was anatomical and did the vaginal mesh surgery last month and also said it wasn't neurological. (yet the surgery didn't work ha ha -- all that and nothing changed).
On June 1st (the last time I saw him), the MS Specialist said, "I can safely say that you dont have MS". I'll see you in 3 or 4 months. He also stated that the lesions I have do not explain the symptoms I'm having. (Which I thought that is not always the case but hell what do I know).
Anyways, I think the primary now feels that since the MS Specialist feels it is not MS she has to think otherwise too?
The only reason why I asked for the MRI again with and without contrast according to MS Protocol is because the past two weeks I started feeling worse with the fatigue, paresthesias started acting up again, vertigo (new), the goose bumps in one leg and only anterior and my balance is worse. The primary didnt seem to have a problem with ordering it at first.
Now it seems that it is a problem and that she wrote in the clinical notes in the requisition form, "Rule out MS" and "MS protocol".
I sincerely hope they would at least not do the tumor protocol as they did when I was hospitalized in April. I would be very upset if they do.
I go for the brain MRI tomorrow. I'll see what the tech says. My Dr's office faxed a new requisition form to the imaging place so I do not know now if the "MS protocol" is on it anymore.
@ Kel1lost: I had multiple lesions in the frontal, parietal, temporal, periventricular areas that are documented by the neuroradiologist. I still don't have an answer.
I
I had all my MRI's done on the 1.5. Many, many lesions showed up. On my spine and brain. Everything will be good!
Kelli
Kelli
This is your Primary care doctor and not a neurologist, right? What a waste of insurance resources to do the wrong type of test, unless this doctor is not even looking for MS. Sorry, but I don't remember that part of this saga for you.
The imaging lab most certainly can follow MS protocol without doing contrast. They do it all the time if someone has a reason (allergies, bad kidneys) to skip the dye.
Ess is absolutely right that the contrast is not necessary.
Sorry this is so crazy!
Lulu
The imaging lab most certainly can follow MS protocol without doing contrast. They do it all the time if someone has a reason (allergies, bad kidneys) to skip the dye.
Ess is absolutely right that the contrast is not necessary.
Sorry this is so crazy!
Lulu
Never mind on that one either.
Primary still wants to do without contrast and obviously not to MS Protocol. What a waste of time.
What is it to them if they just do what I ask? I mean -- the primary knows it is important to me to finally have a MRI done correctly and I get this.
Now I'm upset.
Primary still wants to do without contrast and obviously not to MS Protocol. What a waste of time.
What is it to them if they just do what I ask? I mean -- the primary knows it is important to me to finally have a MRI done correctly and I get this.
Now I'm upset.
Well I just called to make my appointment for the Brain MRI and Cspine/Tspine and all was set.
I get a phone call 5 minutes later and the imaging place said the Dr has to do with/without contrast if she wants it to be according to MS Protocol which is written on the requisition. Now that person has to call the office and have the doctor make up a new req and get a new authorization number.
I don't know why this is such a hardship. What is it to them to change the damn thing back to its original order anyways? It's my gosh darn health here.
Blech
I get a phone call 5 minutes later and the imaging place said the Dr has to do with/without contrast if she wants it to be according to MS Protocol which is written on the requisition. Now that person has to call the office and have the doctor make up a new req and get a new authorization number.
I don't know why this is such a hardship. What is it to them to change the damn thing back to its original order anyways? It's my gosh darn health here.
Blech
Good thing to know essdipity. I just received a phone call from the Dr's office and they will "NOT" change the order anyways.
Thanks for your input!
Thanks for your input!
When MRI is done without contrast, ALL lesions show up. It's just not possible to tell which ones may be new. That's the only difference, and for most purposes it doesn't matter that much. If you have old MRI images that show x number of lesions, and new ones that show x +y, that's enough to show dissemination in both time and space.
I've had loads of MRIs and never once had a lesion enhance, even though I have loads of lesions.
Although use of contrast has its purpose, not using is far from a waste of time, plus you'll be in the magnet considerably less time.
ess
I've had loads of MRIs and never once had a lesion enhance, even though I have loads of lesions.
Although use of contrast has its purpose, not using is far from a waste of time, plus you'll be in the magnet considerably less time.
ess
Hi guys,
It's a 1.5 T machine, same as the last one. The only difference is it will be 3mm slices and Axial T2 and Sagittal FLAIR instead of the tumor protocol they did the last time I was in the hospital.
However, I just called Americhoice and they told me my primary downgraded the diagnostic test with the coordinator at their office. They told me that my primary would need to rewrite the requisition form again and have them resubmit it for authorization again. Honestly, I would rather do this right if it will make a difference.
From my understanding, without contrast, no new lesions will show up and will be missed. Active lesions will be missed. (If there are any). Why take that chance of "missing" it and the time I got to spend beneath the machine anyways, might as well get it all done.
So I left a message to the secretary asking her to ask my primary to rewrite the requisition for me and resubmit it. I hope they wont be upset that I've asked this to be done. But hey, its my "health" and its my "life".
Thanks for your answers!
Lisa
It's a 1.5 T machine, same as the last one. The only difference is it will be 3mm slices and Axial T2 and Sagittal FLAIR instead of the tumor protocol they did the last time I was in the hospital.
However, I just called Americhoice and they told me my primary downgraded the diagnostic test with the coordinator at their office. They told me that my primary would need to rewrite the requisition form again and have them resubmit it for authorization again. Honestly, I would rather do this right if it will make a difference.
From my understanding, without contrast, no new lesions will show up and will be missed. Active lesions will be missed. (If there are any). Why take that chance of "missing" it and the time I got to spend beneath the machine anyways, might as well get it all done.
So I left a message to the secretary asking her to ask my primary to rewrite the requisition for me and resubmit it. I hope they wont be upset that I've asked this to be done. But hey, its my "health" and its my "life".
Thanks for your answers!
Lisa
Lis,
It's silly, really for the order to not have included the contrast. If your lesioned up, someone will want it w/contrast at a future point for sure. But, don't you go worrying about that, girl.
It will be fine - just make sure the place has a strong magnet like Johnnie B says!
It's silly, really for the order to not have included the contrast. If your lesioned up, someone will want it w/contrast at a future point for sure. But, don't you go worrying about that, girl.
It will be fine - just make sure the place has a strong magnet like Johnnie B says!
The contrast will only show newer lesions, 45 days old or less.
My questions are, did the Dr request contrast and do you know if your MRI will be done
on 1.5T or 3T, because the spine is harder to scan on the 1.5
best of luck to you
Johnniebear
My questions are, did the Dr request contrast and do you know if your MRI will be done
on 1.5T or 3T, because the spine is harder to scan on the 1.5
best of luck to you
Johnniebear
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