daysma
08-31-2008, 04:52 PM
My doctor diagnosed me with MS before I had the second MRI. The first one was 3 years ago and it seemed it was negative, according to a report my doc had recieved. Upon his further investigation, there was in fact 3 lesions noted. Not sure why they called that a negative MRI for MS. Now after a second MRI three years after the first, there are "multiple lesions noted"
So the diagnosis is confirmed. I dont know how to edit the title of this thread, so I am sorry if it is confusing.
So the diagnosis is confirmed. I dont know how to edit the title of this thread, so I am sorry if it is confusing.
Sponsor
daysma
08-31-2008, 05:03 PM
I did have an MRI 3 years ago that showed 2 flares and some shading in the white matter.
I had another MRI done on Friday. I dont know the results yet, but I have every single symptom of MS except the bladder/bowel ones.
So I should modify my post, by saying the MRI was negative, I meant the one 3 years ago. But I am wondering if there is no lesions found on this one, is it possible I still have MS? My doctor and the neurologist he consulted with are both convinced I have it.
Any ideas and advice would be greatly appreciated. I am scared of this diagnosis, but somehow relieved. I have thought I had become the worlds biggest clutz over the last 3 years. MANY falls, broken bones, complete loss of feeling in my legs, constant tingling and numbness in my arms and legs, tremors, blurred vision. The list goes on.
Thank you!!!!!!!
I had another MRI done on Friday. I dont know the results yet, but I have every single symptom of MS except the bladder/bowel ones.
So I should modify my post, by saying the MRI was negative, I meant the one 3 years ago. But I am wondering if there is no lesions found on this one, is it possible I still have MS? My doctor and the neurologist he consulted with are both convinced I have it.
Any ideas and advice would be greatly appreciated. I am scared of this diagnosis, but somehow relieved. I have thought I had become the worlds biggest clutz over the last 3 years. MANY falls, broken bones, complete loss of feeling in my legs, constant tingling and numbness in my arms and legs, tremors, blurred vision. The list goes on.
Thank you!!!!!!!
Nenu
08-31-2008, 06:04 PM
You can still be diagnosed with MS with a negative MRI. What areas were included in your most recent MRI? Did it include the brain and spinal chord?
What other testing was completed to date? Was a lumbar puncture performed?
What other testing was completed to date? Was a lumbar puncture performed?
sunshine149
08-31-2008, 06:18 PM
I had a major flare-up in 1997 which involved being hosptialized. I had all the tests, including an MRI which was negative (brain, cervical and thorasic) and it remained that way for the next 1.5 years until some lesions appeared which made the MS-probable diagnosis a MS-definite diagnosis.
Bearygood
08-31-2008, 06:35 PM
Hi, daysma. I'm going to correct some of your language here, not to be a smarty pants, but because it's important to know the lingo if you're going to be doing any research on this and it will give you a better understanding. :)
An MRI shows lesions,not "flares" (also known as exacerbations). However, if you are in a flare and have an MRI with contrast, it is very possible that they will "light up". What the lit lesions represent is disease activity. You can also have lesions light up without feeling that you are in a flare physically.
I'm not sure what you mean by shading, but by what you wrote your MRI showed 3 years ago, why do you say that it was normal? :confused:
As others have inferred, you can have MS and have normal MRIs. Disease activity is what causes lesions so that comes before the scarring -- and it can sometimes take a very, very long time for lesions to show up.
An MRI shows lesions,not "flares" (also known as exacerbations). However, if you are in a flare and have an MRI with contrast, it is very possible that they will "light up". What the lit lesions represent is disease activity. You can also have lesions light up without feeling that you are in a flare physically.
I'm not sure what you mean by shading, but by what you wrote your MRI showed 3 years ago, why do you say that it was normal? :confused:
As others have inferred, you can have MS and have normal MRIs. Disease activity is what causes lesions so that comes before the scarring -- and it can sometimes take a very, very long time for lesions to show up.
daysma
09-01-2008, 11:56 AM
Thank you for the correction in the language. I need to know this!
Ok, here is what the MRI in 2005 said:
Findings:
2 small flairs and T2 hypertension fucus is identified in the periventricular white matter of the cerebral hemisphere. They do not have mass effect and do not demonstrate enhancement following gadolinium administration. Teh brain parenchyma is otherwise within normal limits. There is no evidence of mass or hemorrhage. There is no edema identified. No abnormal enhancement was seen.Ther is no focal region of restricted diffusion.
Opinion:
2 small flair and T2 hyperintensive foci in the periventricular white matter of each cerebral hemisphere. No infarct, mass, or edema identified. No defined lesions noted, but this does not rule out a diagnosis of MS. Further MRI testing is advised at a yearly basis or during a recurrance of symptoms.
I am not sure why I thought the doctor said "shading" that came from my family doctor. I dont know what he meant. When reading this report it does not mention shading?
Does this sound like it is MS?
I wrote that it was "normal" because it said it was within normal limits.
So reading what I have quoted from my 2005 MRI report, do you have an opinion on whether I have MS or not?
Thanks for your input, I really appreciate it.
daysma
Ok, here is what the MRI in 2005 said:
Findings:
2 small flairs and T2 hypertension fucus is identified in the periventricular white matter of the cerebral hemisphere. They do not have mass effect and do not demonstrate enhancement following gadolinium administration. Teh brain parenchyma is otherwise within normal limits. There is no evidence of mass or hemorrhage. There is no edema identified. No abnormal enhancement was seen.Ther is no focal region of restricted diffusion.
Opinion:
2 small flair and T2 hyperintensive foci in the periventricular white matter of each cerebral hemisphere. No infarct, mass, or edema identified. No defined lesions noted, but this does not rule out a diagnosis of MS. Further MRI testing is advised at a yearly basis or during a recurrance of symptoms.
I am not sure why I thought the doctor said "shading" that came from my family doctor. I dont know what he meant. When reading this report it does not mention shading?
Does this sound like it is MS?
I wrote that it was "normal" because it said it was within normal limits.
So reading what I have quoted from my 2005 MRI report, do you have an opinion on whether I have MS or not?
Thanks for your input, I really appreciate it.
daysma
Bearygood
09-01-2008, 12:12 PM
Aha!!! I get it. "Flair" is different than "flare" (and we see this word misspelled a lot and used interchangeably, hence MY confusion!). "Flair" in your MRI report is a radiological term.
In my non-medical read of this it says that it is inconclusive. There is no activity (the "no enhancement" means that whatever is there did not light up with contrast). Something was seen but the lesions were ill-defined -- however, the periventricular region is very common to be affected by MS. Therefore, MS cannot be either ruled in or ruled out. The MRI is not completely normal though -- something was seen. The report doesn't say "shading" because that's not a word that is used (expcept by your doctor!).
Was this by any chance done in an open MRI?
In my non-medical read of this it says that it is inconclusive. There is no activity (the "no enhancement" means that whatever is there did not light up with contrast). Something was seen but the lesions were ill-defined -- however, the periventricular region is very common to be affected by MS. Therefore, MS cannot be either ruled in or ruled out. The MRI is not completely normal though -- something was seen. The report doesn't say "shading" because that's not a word that is used (expcept by your doctor!).
Was this by any chance done in an open MRI?
daysma
09-01-2008, 12:17 PM
You can still be diagnosed with MS with a negative MRI. What areas were included in your most recent MRI? Did it include the brain and spinal chord?
What other testing was completed to date? Was a lumbar puncture performed?
I am having a cervical CT scan done on Wednesday, although all that I have read indicates this is not a great diagnostic test. The next test they want to do is a lumbar puncuture. That sounds PAINFUL!!
I am hoping these most recent tests are more definitive as I appear to be in the midst of a "flare up" at the moment. I am losing the feeling in both legs all the time. I took a step and could not feel anything from the hip down and did not feel the floor with my left foot and stepped wrong, breaking the bones in my foot. 3 days ago I stood up in the tub, I had complete feeling in both legs moments before standing,upon standing I lost feeling in both legs and fell and broke a rib when I fell onto the side of the tub and bruised the bejeepers out of my hip and buttocks. They are BLACK right now. I would almost be relieved to find it was MS. Other causes of my "accidents" that I have read about scare me far more than MS does!!
What other testing was completed to date? Was a lumbar puncture performed?
I am having a cervical CT scan done on Wednesday, although all that I have read indicates this is not a great diagnostic test. The next test they want to do is a lumbar puncuture. That sounds PAINFUL!!
I am hoping these most recent tests are more definitive as I appear to be in the midst of a "flare up" at the moment. I am losing the feeling in both legs all the time. I took a step and could not feel anything from the hip down and did not feel the floor with my left foot and stepped wrong, breaking the bones in my foot. 3 days ago I stood up in the tub, I had complete feeling in both legs moments before standing,upon standing I lost feeling in both legs and fell and broke a rib when I fell onto the side of the tub and bruised the bejeepers out of my hip and buttocks. They are BLACK right now. I would almost be relieved to find it was MS. Other causes of my "accidents" that I have read about scare me far more than MS does!!
daysma
09-01-2008, 12:18 PM
What is an "open MRI"? I dont know.
Bearygood
09-01-2008, 12:20 PM
I am having a cervical CT scan done on Wednesday, although all that I have read indicates this is not a great diagnostic test. The next test they want to do is a lumbar puncuture. That sounds PAINFUL!!
I am hoping these most recent tests are more definitive as I appear to be in the midst of a "flare up" at the moment. I am losing the feeling in both legs all the time. I took a step and could not feel anything from the hip down and did not feel the floor with my left foot and stepped wrong, breaking the bones in my foot. 3 days ago I stood up in the tub, I had complete feeling in both legs moments before standing,upon standing I lost feeling in both legs and fell and broke a rib when I fell onto the side of the tub and bruised the bejeepers out of my hip and buttocks. They are BLACK right now. I would almost be relieved to find it was MS. Other causes of my "accidents" that I have read about scare me far more than MS does!!
Please tell me you mean a c-spine MRI and not a CT!!! :confused:
I'm so sorry to hear about your accident!
There are lots of people here who have had LPs and can give you good advice. If the MRIs continue to be inconclusive having an LP would probably be a good idea (although do note that all people with MS do NOT have positive LPs.)
When do you get the results of your most recent brain MRI?
I am hoping these most recent tests are more definitive as I appear to be in the midst of a "flare up" at the moment. I am losing the feeling in both legs all the time. I took a step and could not feel anything from the hip down and did not feel the floor with my left foot and stepped wrong, breaking the bones in my foot. 3 days ago I stood up in the tub, I had complete feeling in both legs moments before standing,upon standing I lost feeling in both legs and fell and broke a rib when I fell onto the side of the tub and bruised the bejeepers out of my hip and buttocks. They are BLACK right now. I would almost be relieved to find it was MS. Other causes of my "accidents" that I have read about scare me far more than MS does!!
Please tell me you mean a c-spine MRI and not a CT!!! :confused:
I'm so sorry to hear about your accident!
There are lots of people here who have had LPs and can give you good advice. If the MRIs continue to be inconclusive having an LP would probably be a good idea (although do note that all people with MS do NOT have positive LPs.)
When do you get the results of your most recent brain MRI?
Bearygood
09-01-2008, 12:22 PM
What is an "open MRI"? I dont know.
Exactly what it sounds like. It's not a closed tube -- but from your answer, I'm assuming that you had a closed MRI. The reason I asked is because what was seen in 2005 was ill-defined. When imaging the brain, a closed MRI is the way to go for better pictures.
Exactly what it sounds like. It's not a closed tube -- but from your answer, I'm assuming that you had a closed MRI. The reason I asked is because what was seen in 2005 was ill-defined. When imaging the brain, a closed MRI is the way to go for better pictures.
daysma
09-01-2008, 12:27 PM
Nope, a CT. You see, originally when I presented to my doctor the most recent time...............I have been complaining of numbness and tingling for MONTHS...........he wanted to rule out a problem with my neck such as a nerve being caught between vertebrae. I had been in a car accident 18 years ago and had sever neck injuries. He thought that was what was causing the numbness and tingling. So, he ordered the CT. Then, over the weekend he apparently could not stop thinking of me and my symptoms and consulted a neurologist who said he felt I had MS and then ordered an urgent MRI to try to see something in this flare up stage. I am not sure if they will cancel the CT or not. Maybe it will show something? I am so new to this, even though I have had my suspicions for quite some time. I did not want to look up MS and get myself worked up if it was not that. Now I have been reading everything I can and I seem like a text book MS patient!!
Again, what is an "open MRI"?
Again, what is an "open MRI"?
daysma
09-01-2008, 12:29 PM
Oh. No it was not a closed tube. It was a bed, with a big "donut" shaped thing that they centered my head under and it seemed to spin around rapidly. My legs and chest were not inside anything.
I had the same type of MRI this last time. I was not inside any kind of tube. Again, just my head. Had they moved the bed further up my head would have stuck out the other end.
I had the same type of MRI this last time. I was not inside any kind of tube. Again, just my head. Had they moved the bed further up my head would have stuck out the other end.
Bearygood
09-01-2008, 12:50 PM
I'm very confused. Let's start with the easy part. CANCEL THE CT -- if they're imaging your c-spine they should be doing an MRI. MS lesions can show up anywhere on the spinal cord. Some doctors do a c-spine MRI along with the brain right away but many do not and only do a c-spine if something in the brain is showing OR if MS is suspected and NOTHING in the brain is showing. Many doctors (not all) will go on to do a thoracic spine (t-spine) MRI from there, usually if MS has been confirmed. MS lesions do not appear on the lumbar spine (l-spine) except in the junction where it meets the t-spine, but that is covered in a t-spine MRI. If MS is suspected, they should be doing an MRI, not a CT scan.
Re: the MRI you had, I think you might have had an open one. Look for pictures of an open MRI and let us know if that looks like the kind of machine you were in. If this is the case, that would explain why the pictures were ill-defined! I'm hoping this is just a case of confusion because your doctors should know better than to order an open MRI to image the brain for MS!
Re: the MRI you had, I think you might have had an open one. Look for pictures of an open MRI and let us know if that looks like the kind of machine you were in. If this is the case, that would explain why the pictures were ill-defined! I'm hoping this is just a case of confusion because your doctors should know better than to order an open MRI to image the brain for MS!
daysma
09-01-2008, 01:13 PM
I have had quite a few MRI's in the last few years, knee, legs, brain, abdomen. They are all the open ones. I have only once ever seen a closed one and that was 15 years ago when I had a liver MRI. I am not sure we have the closed ones here anymore. Or if so they are being replaced with the open ones.
You think I should cancel the CT of my cervical spine? I would be curious though to find out if this IS simply a nerve stuck between my vertebrae. But then again, they are talking about the LP so it is probably a waste of time, right?
You think I should cancel the CT of my cervical spine? I would be curious though to find out if this IS simply a nerve stuck between my vertebrae. But then again, they are talking about the LP so it is probably a waste of time, right?
daysma
09-01-2008, 01:19 PM
This is the MRI I had. Same machine, same thing around head.
They say this is a closed one?! What is the difference? My head had the cage thing around it with a mirror that I could look in to see the techs if I was scared, although they advised me not to unless absolutely necessary as any movement could screw up the test. I had arm and head twitching at the time so they had to give me some sedation...........valium I think...........lovely drug btw! LOL!!
When I typed in Closed MRI they showed mainly these ones, but a couple that were long tubes that your whole body goes in with no opening at the one end. Confused.
They say this is a closed one?! What is the difference? My head had the cage thing around it with a mirror that I could look in to see the techs if I was scared, although they advised me not to unless absolutely necessary as any movement could screw up the test. I had arm and head twitching at the time so they had to give me some sedation...........valium I think...........lovely drug btw! LOL!!
When I typed in Closed MRI they showed mainly these ones, but a couple that were long tubes that your whole body goes in with no opening at the one end. Confused.
Bearygood
09-01-2008, 01:21 PM
Nope. Not true in either my OR most neurologist's opinons. Notice that in your post with the quote it included ®. The quote you saw was obviously by the manufacturer of that machine. Think about it -- why do you think I even asked you in the first place? ;)
Listen, when I had my first MRI I freaked out -- couldn't go through with it. (Longer story.) I called the doctor the next morning and was told the same thing that the radiologist told me. If you have an open MRI, the pictures will not be as good. I was very strongly advised to not have the open MRI and that they only prescribe that in cases where the patient is too large for the tube or have serious claustrophobis. But essentially, that it could very well be a waste of time. I heeded their advice and with the assistance of my new best friend valium, got through the MRI fine. I've now had I think 5 -- no longer any issues (but valium is still my best friend on MRI days ;).)
This could very well explain why the pictures were ill-defined. And a CT scan will be even LESS definitive!
If you research the protocol for brain imaging when dxing MS you will see.
What are your doctors thinking??? :confused:
Listen, when I had my first MRI I freaked out -- couldn't go through with it. (Longer story.) I called the doctor the next morning and was told the same thing that the radiologist told me. If you have an open MRI, the pictures will not be as good. I was very strongly advised to not have the open MRI and that they only prescribe that in cases where the patient is too large for the tube or have serious claustrophobis. But essentially, that it could very well be a waste of time. I heeded their advice and with the assistance of my new best friend valium, got through the MRI fine. I've now had I think 5 -- no longer any issues (but valium is still my best friend on MRI days ;).)
This could very well explain why the pictures were ill-defined. And a CT scan will be even LESS definitive!
If you research the protocol for brain imaging when dxing MS you will see.
What are your doctors thinking??? :confused:
Bearygood
09-01-2008, 01:23 PM
If you are in doubt, ask. But the fact that not even your chest was in the tube seems like a clue. (If you call the radiology facility they will be able to tell you.)
daysma
09-04-2008, 02:29 AM
Nope. Not true in either my OR most neurologist's opinons. Notice that in your post with the quote it included ®. The quote you saw was obviously by the manufacturer of that machine. Think about it -- why do you think I even asked you in the first place? ;)
Listen, when I had my first MRI I freaked out -- couldn't go through with it. (Longer story.) I called the doctor the next morning and was told the same thing that the radiologist told me. If you have an open MRI, the pictures will not be as good. I was very strongly advised to not have the open MRI and that they only prescribe that in cases where the patient is too large for the tube or have serious claustrophobis. But essentially, that it could very well be a waste of time. I heeded their advice and with the assistance of my new best friend valium, got through the MRI fine. I've now had I think 5 -- no longer any issues (but valium is still my best friend on MRI days ;).)
This could very well explain why the pictures were ill-defined. And a CT scan will be even LESS definitive!
If you research the protocol for brain imaging when dxing MS you will see.
What are your doctors thinking??? :confused:
MRI results are in. I have MULTIPLE lesions! I am being sent to the MS Clinic for a complete workup to determing the severity of the the MS and to get on the proper treatment plan! Damn. I was hoping they were wrong! Thanks for all your info. It really helped!!
Listen, when I had my first MRI I freaked out -- couldn't go through with it. (Longer story.) I called the doctor the next morning and was told the same thing that the radiologist told me. If you have an open MRI, the pictures will not be as good. I was very strongly advised to not have the open MRI and that they only prescribe that in cases where the patient is too large for the tube or have serious claustrophobis. But essentially, that it could very well be a waste of time. I heeded their advice and with the assistance of my new best friend valium, got through the MRI fine. I've now had I think 5 -- no longer any issues (but valium is still my best friend on MRI days ;).)
This could very well explain why the pictures were ill-defined. And a CT scan will be even LESS definitive!
If you research the protocol for brain imaging when dxing MS you will see.
What are your doctors thinking??? :confused:
MRI results are in. I have MULTIPLE lesions! I am being sent to the MS Clinic for a complete workup to determing the severity of the the MS and to get on the proper treatment plan! Damn. I was hoping they were wrong! Thanks for all your info. It really helped!!
brclrk80
09-04-2008, 10:36 AM
daysma, do you have your MRI report? I am curious to know the result and impression.
daysma
09-05-2008, 12:42 AM
daysma, do you have your MRI report? I am curious to know the result and impression.
Yes, it came back with MULTIPLE lesions and I have been referred to the MS Clinic in Calgary. Postive diagnosis. I had 2 "lesions" 3 years ago, and now MULTIPLE. That is how the radiologist wrote it, caps and bold face. His recommendation was immediate admission to the MS Clinic. So it looks like things are going to move fast now. They want to assess my "level" of MS, does that sound right? And to get me on the medications as soon as possible to try to slow this down.
Thank you for asking!!
Ginger
Yes, it came back with MULTIPLE lesions and I have been referred to the MS Clinic in Calgary. Postive diagnosis. I had 2 "lesions" 3 years ago, and now MULTIPLE. That is how the radiologist wrote it, caps and bold face. His recommendation was immediate admission to the MS Clinic. So it looks like things are going to move fast now. They want to assess my "level" of MS, does that sound right? And to get me on the medications as soon as possible to try to slow this down.
Thank you for asking!!
Ginger
Nenu
09-05-2008, 01:37 AM
Ginger, sorry to hear the news (no one likes hearing it's MS), but I'm sure it must be a relief to finally be getting through this ordeal. I'm praying for you that things will look up once you've met with the clinic. :)
Bearygood
09-05-2008, 12:02 PM
Hi, Ginger. Sorry about the dx but I'm glad that you're getting answers.
BTW, we cross-posted a while ago and I actually didn't see your post about the cage/mirror until right now, LOL. Yes, that sounds like it would have been a closed MRI. :)
In terms of determining the "severity" of the MS, that is actually really something that can't be done just by looking at lesions. It's more of a symptom and neurological examination type of thing and how you progress (or don't) over time. There are people with lots of lesions and few sx and people with few lesions who have a much harder time. To some degree this has to do with where the lesions are -- for example, spinal lesions are more likely to indicate possible mobility problems and in terms of the brain, there are regions that are better at re-routed themselves than others. But even then, it's not an exact science! There are people with only spinal lesions walking around (actually one on this board). Welcome to the mysterious disease that is MS.
Please keep us posted!
BTW, we cross-posted a while ago and I actually didn't see your post about the cage/mirror until right now, LOL. Yes, that sounds like it would have been a closed MRI. :)
In terms of determining the "severity" of the MS, that is actually really something that can't be done just by looking at lesions. It's more of a symptom and neurological examination type of thing and how you progress (or don't) over time. There are people with lots of lesions and few sx and people with few lesions who have a much harder time. To some degree this has to do with where the lesions are -- for example, spinal lesions are more likely to indicate possible mobility problems and in terms of the brain, there are regions that are better at re-routed themselves than others. But even then, it's not an exact science! There are people with only spinal lesions walking around (actually one on this board). Welcome to the mysterious disease that is MS.
Please keep us posted!
daysma
09-06-2008, 02:58 AM
I am going to the MS Clinic where they are supposed to determine the severity with a battery of tests. We will see. They fear the MS is also in my spinal column. I had some shots into my back today. If they stop the tremors and spacicity then it is POSSIBLE there are lesions or whatever in my spinal column and the next test is an LP. Sounds painful!!
Thanks for all the advice. I really appreciate it!!!
Thanks for all the advice. I really appreciate it!!!
ellekay
09-06-2008, 03:23 AM
Daysma, did you now have a closed MRI to determine your diagnoses better? Because reading your last MRI report, there were no lesions found and now you have full blown MS without a shadow of a doubt. So what happened?
I ask because i soon will be doing an MRI, not sure what to expect there but im guessing suffercation? and i am worried that they will find nothing, i will still have symptoms and they will kill me with more painful and uncomfortable tests.
So what do you recommend that i do? Was your spine checked also? If so, did you do LP or MRI for that?
I ask because i soon will be doing an MRI, not sure what to expect there but im guessing suffercation? and i am worried that they will find nothing, i will still have symptoms and they will kill me with more painful and uncomfortable tests.
So what do you recommend that i do? Was your spine checked also? If so, did you do LP or MRI for that?
Nenu
09-06-2008, 03:37 AM
I ask because i soon will be doing an MRI, not sure what to expect there but im guessing suffercation? and i am worried that they will find nothing, i will still have symptoms and they will kill me with more painful and uncomfortable tests.
Calm yourself Ellekay :) Deep breaths.
My MRI experience was: mask over my eyes, warm hospital blankets over me to keep me cozy, and earplugs to dampen the noise of the MRI machine.
No suffocation. What so ever. If you're clausterphobic, tell the staff. They can give you drugs to calm you before the procedure.
I actually fell asleep during the MRI procedure. Dozed off. The bed I was laying on vibrated. It was nice, like a full body massage lol!
Lumbar Puncture, in most cases, is absolutely nothing to fear. They give you a freezing needle first, then you may feel pressure of the needle being inserted, but not pain. It's not a long procedure at all. Just bed rest afterward staying horizontal, and drinking a lot of caffeine the day before, and the day of the procedure.
Calm yourself Ellekay :) Deep breaths.
My MRI experience was: mask over my eyes, warm hospital blankets over me to keep me cozy, and earplugs to dampen the noise of the MRI machine.
No suffocation. What so ever. If you're clausterphobic, tell the staff. They can give you drugs to calm you before the procedure.
I actually fell asleep during the MRI procedure. Dozed off. The bed I was laying on vibrated. It was nice, like a full body massage lol!
Lumbar Puncture, in most cases, is absolutely nothing to fear. They give you a freezing needle first, then you may feel pressure of the needle being inserted, but not pain. It's not a long procedure at all. Just bed rest afterward staying horizontal, and drinking a lot of caffeine the day before, and the day of the procedure.
ellekay
09-06-2008, 03:49 AM
Thanks Nenu. Im generally a calm and collected person, but right now i have conerns and i dont like the unknown.
Your experience sounds pleasant though, but falling asleep indicates to me a lengthy time under.
Your experience sounds pleasant though, but falling asleep indicates to me a lengthy time under.
Nenu
09-06-2008, 05:15 AM
Thanks Nenu. Im generally a calm and collected person, but right now i have conerns and i dont like the unknown.
Your experience sounds pleasant though, but falling asleep indicates to me a lengthy time under.
It wasn't really lengthy. 1h or a little more than in total. Of course, I was dozing because I was barely sleeping at the time because I had so much anxiety over what was happening with me.
I can understand your state of mind right now, as any of us can that have been in the 'limbo' period.
I was so dreadfully scared it was something even worse than MS. If only I had known to just wait out the doctor visits and not stress at the time. It's tough though, I hear you.
Your experience sounds pleasant though, but falling asleep indicates to me a lengthy time under.
It wasn't really lengthy. 1h or a little more than in total. Of course, I was dozing because I was barely sleeping at the time because I had so much anxiety over what was happening with me.
I can understand your state of mind right now, as any of us can that have been in the 'limbo' period.
I was so dreadfully scared it was something even worse than MS. If only I had known to just wait out the doctor visits and not stress at the time. It's tough though, I hear you.
ellekay
09-06-2008, 05:23 AM
Yeah im terrified that they'll see a brain tumor or something of the sort that can be life threatening. Thats my number one concern.
I can deal with MS, cant deal with cancer.
What were your symptoms? And how old are you? Apparently is common in girls in their 20's. I am 28.
I can deal with MS, cant deal with cancer.
What were your symptoms? And how old are you? Apparently is common in girls in their 20's. I am 28.
Bearygood
09-06-2008, 10:23 AM
I am going to the MS Clinic where they are supposed to determine the severity with a battery of tests. We will see. They fear the MS is also in my spinal column. I had some shots into my back today. If they stop the tremors and spacicity then it is POSSIBLE there are lesions or whatever in my spinal column and the next test is an LP. Sounds painful!!
Thanks for all the advice. I really appreciate it!!!
Gotcha. Again though, I just want to stress that there are people who have come out of bad exacerbations with little or no residual signs and also unfortunately, vice versa. Although there are correlations between where lesions are found an potential sx (ie; which part of the brain is associated with various functions), they cannot definitively predict that something will or won't happen.
It's good they're doing an MRI of the spine. Are you having both the t-spine and c-spine imaged or just the c-spine?
One step at a time. A lot of people do not have to have an LP.
Thanks for all the advice. I really appreciate it!!!
Gotcha. Again though, I just want to stress that there are people who have come out of bad exacerbations with little or no residual signs and also unfortunately, vice versa. Although there are correlations between where lesions are found an potential sx (ie; which part of the brain is associated with various functions), they cannot definitively predict that something will or won't happen.
It's good they're doing an MRI of the spine. Are you having both the t-spine and c-spine imaged or just the c-spine?
One step at a time. A lot of people do not have to have an LP.
daysma
09-06-2008, 01:48 PM
I am not having an MRI of my spine yet. They want to space out MRI's and CT's........even the smallest amount of radiation emmited from these tests makes them want to space out the exposure. The next step would be an LP, lumbar puncture.
Does anyone know if thyroid problems are associated with MS? Apparently I have nodules on mine that they just saw when they did the CT of my neck, which they forgot to cancel and I went to anyway (in the hopes this was all just a pinched nerve, although I was already told the diagnosis, me the Queen of Denial!) I have not read anything about thyroid problems being associated, but have read that with auto immune diseases, which I have, that any part of your body can be attacked. I have already lost a kidney my body attacked, had a hysterectomy from problems they associated to the auto immune problems. My immune system is way too high and my antibodies turn against my body and organs. Hmmm........they should have made this MS diagnosis a long time ago I think.
Thanks again for all the info. When they DO do an MRI of my spine, I will ask them which kind. Is one better than the other? Should I "request" one over the other? I dont want them to get mad that I am asking for one if they are ordering another, but I also want the most acurate tests to be done.
Thanks:)
Does anyone know if thyroid problems are associated with MS? Apparently I have nodules on mine that they just saw when they did the CT of my neck, which they forgot to cancel and I went to anyway (in the hopes this was all just a pinched nerve, although I was already told the diagnosis, me the Queen of Denial!) I have not read anything about thyroid problems being associated, but have read that with auto immune diseases, which I have, that any part of your body can be attacked. I have already lost a kidney my body attacked, had a hysterectomy from problems they associated to the auto immune problems. My immune system is way too high and my antibodies turn against my body and organs. Hmmm........they should have made this MS diagnosis a long time ago I think.
Thanks again for all the info. When they DO do an MRI of my spine, I will ask them which kind. Is one better than the other? Should I "request" one over the other? I dont want them to get mad that I am asking for one if they are ordering another, but I also want the most acurate tests to be done.
Thanks:)
Bearygood
09-06-2008, 03:04 PM
Just FYI, there is no radiation with an MRI.
A c-spine is more common for a doctor to order but IMHO, in a perfect world, both c and t-spine would be done as lesions can occur in both those areas. They can also occur on the very top portion of the l-spine where it meets the thoracic but that is covered in a t-spine MRI. In other words, lesions can occur only where the spinal cord is. Having them done at the same time might save you a future trip to the tube and I believe it will take a little less time than if you had them done separately. BUT -- there are doctors who won't order a t-spine, especially before a patient is dxed. It was only after I was dxed that I had a t-spine MRI and they found a lesion (none were found on my c-spine).
There are different kinds of thyroid conditions. Some are autoimmune (ie; Hashimoto's and Graves) and some are not. I am hypothyroid with Hashimoto's. My endocrinologist described my MS connection to me as that I inherited a tendency for my body to make antibodies against itself. No one in my family has MS but there are autoimmune conditions, including other family members with thyroid problems. (BTW, I also have a node and get a sonogram every 2 years to ensure it's in check and there's no need for action.) So while the connection is not necessarily one disease with another specific one, you will often see more than one autoimmune condition in the same person (or family). There's a book I want to check out that I've heard very good things about called "The Autoimmune Epidemic" by Donna Jackson Nakazawa.
A c-spine is more common for a doctor to order but IMHO, in a perfect world, both c and t-spine would be done as lesions can occur in both those areas. They can also occur on the very top portion of the l-spine where it meets the thoracic but that is covered in a t-spine MRI. In other words, lesions can occur only where the spinal cord is. Having them done at the same time might save you a future trip to the tube and I believe it will take a little less time than if you had them done separately. BUT -- there are doctors who won't order a t-spine, especially before a patient is dxed. It was only after I was dxed that I had a t-spine MRI and they found a lesion (none were found on my c-spine).
There are different kinds of thyroid conditions. Some are autoimmune (ie; Hashimoto's and Graves) and some are not. I am hypothyroid with Hashimoto's. My endocrinologist described my MS connection to me as that I inherited a tendency for my body to make antibodies against itself. No one in my family has MS but there are autoimmune conditions, including other family members with thyroid problems. (BTW, I also have a node and get a sonogram every 2 years to ensure it's in check and there's no need for action.) So while the connection is not necessarily one disease with another specific one, you will often see more than one autoimmune condition in the same person (or family). There's a book I want to check out that I've heard very good things about called "The Autoimmune Epidemic" by Donna Jackson Nakazawa.
daysma
09-06-2008, 07:38 PM
I have been diagnosed with Graves a few years ago. There has been no medical intervention because the TSH and the other ones for hyperthyroidism keep coming back as Hyper and then normal. They think it keeps going up and down. Kinda like it when it is hyper, weight loss the easy way! LOL! But the nodules, while I have had them for a year and a half, they have grown quite a bit and they want to find out if intervention is needed at this point.
When I went in to get the requisition for the ultra sound of my thyroid I asked if this perhaps was just what was causing all my symptoms............my doctor, every the comedian, said.............get off the boat to the River Denial, Cleopatra!.........you have MS!! THIS IS A SYMPTOM OF MS! He is a funny guy and always uses humor with me as he knows I will laugh and am always positive and have a great sense of humor and respond with laughter and jokes.
Even though there is no ionizing radiation in an MRI there is a "slight" amount of radiation and he just does not want me to have multiple MRI's and CT's just in case. My son had cancer at 5 and he is just overly cautious. I get that and am greatful he is so conciencous.(sp?) So, if a LP is what they want to do, I will have it. Then perhaps the MRI's you suggested.
I had a horrific episode yesterday at work! Lost feeling in my legs, was shaking like a leaf, had terrible double vision and was losing feeling in my arms. Had to leave 30 mins early. Feel fine today. My doc wants me to take some anti anxiety medications. What is your opinion of those. He wrote and rx for xanax. I admit, I took one and the shakiness stopped and I felt much more relaxed, but I dont think I could take them while working. They were the 0.5mg ones. He also wants me to take a sleeping aide. I am always EXTREMELY tired, but I can't seem to sleep.
I have to admit, I am getting a little freaked out. The more I found out about MS, the more scared I get.
I am so greatful I found this forum, you guys really reassure me! Thank you!!:)
When I went in to get the requisition for the ultra sound of my thyroid I asked if this perhaps was just what was causing all my symptoms............my doctor, every the comedian, said.............get off the boat to the River Denial, Cleopatra!.........you have MS!! THIS IS A SYMPTOM OF MS! He is a funny guy and always uses humor with me as he knows I will laugh and am always positive and have a great sense of humor and respond with laughter and jokes.
Even though there is no ionizing radiation in an MRI there is a "slight" amount of radiation and he just does not want me to have multiple MRI's and CT's just in case. My son had cancer at 5 and he is just overly cautious. I get that and am greatful he is so conciencous.(sp?) So, if a LP is what they want to do, I will have it. Then perhaps the MRI's you suggested.
I had a horrific episode yesterday at work! Lost feeling in my legs, was shaking like a leaf, had terrible double vision and was losing feeling in my arms. Had to leave 30 mins early. Feel fine today. My doc wants me to take some anti anxiety medications. What is your opinion of those. He wrote and rx for xanax. I admit, I took one and the shakiness stopped and I felt much more relaxed, but I dont think I could take them while working. They were the 0.5mg ones. He also wants me to take a sleeping aide. I am always EXTREMELY tired, but I can't seem to sleep.
I have to admit, I am getting a little freaked out. The more I found out about MS, the more scared I get.
I am so greatful I found this forum, you guys really reassure me! Thank you!!:)
daysma
09-06-2008, 07:40 PM
Well, maybe they will do both of them as I HAVE been diagnosed. The multiple lesions on my recent MRI have left "no room for doubt" according to my family doctor and the neurologist. So, hopefully they will do both after the LP.
ellekay
09-06-2008, 11:28 PM
Daysma,
I have 9 cysts sitting on my thyroid and ive had this disease for a while now. Just recently been for another ultrasound and blood test where they all came out normal.
My thyroid levels are normal.
My sister has the same issue and was normal until she fell pregnant and was diagnosed with Graves disease in which it was threatening to kill the baby. Meds took care of it and baby and mum are fine.
Im unsure if this could be related to MS, as im new here and just as confused about my symptoms but i wouldnt put it past it. It surely does make sense.
Im sorry to hear about those attacks that you've been having. What a horrible experience to not be able to feel your legs! Its all part of the package though. Are you on meds that minimise these attacks?
Elle
I have 9 cysts sitting on my thyroid and ive had this disease for a while now. Just recently been for another ultrasound and blood test where they all came out normal.
My thyroid levels are normal.
My sister has the same issue and was normal until she fell pregnant and was diagnosed with Graves disease in which it was threatening to kill the baby. Meds took care of it and baby and mum are fine.
Im unsure if this could be related to MS, as im new here and just as confused about my symptoms but i wouldnt put it past it. It surely does make sense.
Im sorry to hear about those attacks that you've been having. What a horrible experience to not be able to feel your legs! Its all part of the package though. Are you on meds that minimise these attacks?
Elle
daysma
09-07-2008, 07:35 AM
No, not on the meds yet. I have to go to the MS Clinic and have the battery of tests run to see what meds I need. I know the nodules are not cancerous or dangerous, but it just seemed like yet ANOTHER thing LOL!
I hope you are doing well. You said you were new here as well, when was your diagnosis?
Mine was very recently. Within the last 2 weeks, but have been symptomatic for a very long time.
Take care.
Ginger
I hope you are doing well. You said you were new here as well, when was your diagnosis?
Mine was very recently. Within the last 2 weeks, but have been symptomatic for a very long time.
Take care.
Ginger
ellekay
09-07-2008, 08:14 AM
Hey daysma,
I have not been diagnosed yet, and i hate to diagnose myself but i will be pretty surprised if i dont have MS or some sort of neuro issue.
The have an appt with a neuro doc in Novemember ( trying to get one earlier ) and in the meantime im going to go for an MRI to see whats happening there.
I guess the reason i came on this site was the MS like symptoms im having and which are progressing faster than i thought.
Surprisingly whats bothering me most in the chronic UTI ( urnine infection ) and next week i am undergoing a cystoscopy to see whats happening in there. Im really anxious about that because everytime i go under anesthetic, i fear i'll never wake up, and im also scared of the risks. So thats one symptom along with a whole list of many many many more that bringing me to the end of my tether.
Hope your feeling better today. Whats a battery test?
I have not been diagnosed yet, and i hate to diagnose myself but i will be pretty surprised if i dont have MS or some sort of neuro issue.
The have an appt with a neuro doc in Novemember ( trying to get one earlier ) and in the meantime im going to go for an MRI to see whats happening there.
I guess the reason i came on this site was the MS like symptoms im having and which are progressing faster than i thought.
Surprisingly whats bothering me most in the chronic UTI ( urnine infection ) and next week i am undergoing a cystoscopy to see whats happening in there. Im really anxious about that because everytime i go under anesthetic, i fear i'll never wake up, and im also scared of the risks. So thats one symptom along with a whole list of many many many more that bringing me to the end of my tether.
Hope your feeling better today. Whats a battery test?
Bearygood
09-07-2008, 11:50 AM
Ginger, thanks for the correction about the MRI. I was under the impression that there was nada!
As I said, not all doctors will do the t-spine even after a dx. There's one person here whose doctor didn't even do a c-spine post-dx. (But she's going to take care of that on her next visit. ;))
Just curious -- if the dx is 100% firm, why are they doing an LP? :confused:
As I said, not all doctors will do the t-spine even after a dx. There's one person here whose doctor didn't even do a c-spine post-dx. (But she's going to take care of that on her next visit. ;))
Just curious -- if the dx is 100% firm, why are they doing an LP? :confused:
Nenu
09-07-2008, 01:55 PM
Just curious -- if the dx is 100% firm, why are they doing an LP? :confused:
I'm honestly beginning to wonder if this is a "Canadian thing". Hrm.
I wonder how many Canadians have presented like I did, MRI full of lesions in the right place (that was only the brain too), clear blood work, evoked potentials coming back as a positive for MS, at least 2 isolated neurological episodes... yet my neurologist went ahead and did the LP regardless, and found obands.
These tests are 'free' for patients here, covered by medicare, so maybe their method is that of, do all, since the patient does not pay for the various tests?
I'm honestly beginning to wonder if this is a "Canadian thing". Hrm.
I wonder how many Canadians have presented like I did, MRI full of lesions in the right place (that was only the brain too), clear blood work, evoked potentials coming back as a positive for MS, at least 2 isolated neurological episodes... yet my neurologist went ahead and did the LP regardless, and found obands.
These tests are 'free' for patients here, covered by medicare, so maybe their method is that of, do all, since the patient does not pay for the various tests?
Bearygood
09-07-2008, 02:08 PM
I'm honestly beginning to wonder if this is a "Canadian thing". Hrm.
You know, Nenu, you might be right.
Do you want to send out the memo and let them know that it's not always necessary? :D
Scary reason you gave for the possibility and IMHO, not outside the realm of possibilities.
You know, Nenu, you might be right.
Do you want to send out the memo and let them know that it's not always necessary? :D
Scary reason you gave for the possibility and IMHO, not outside the realm of possibilities.
daysma
09-08-2008, 02:45 AM
I dont know why they want to do an LP. This is all so new to me.
"Battery of tests" is what my doc said. He said the MS Clinic would evaluate me and "do a battery of tests" to see what "stage" I have. From all he said though RRMS is the diagnosis, so what "stage" I have is not clear to me either. There was so much information being thrown at me, it feels like I have bits and pieces and the holes are being filled in HERE by people that actually know what is going on from a pt's point of view. He (doc) did say they would want to see if the lesions were affecting my spinal cord or were confined to my brain. It is all too much right now.
No, as I said before, I am not at this point taking any MS medications. I AM taking a few things for sypmtoms, but not treatment. I take Propanonol for rapid heart rate(most likely from the thyroid though), xanax for panic attacks (as needed, but more lately let me tell you!), and tylenol for pain in my limbs. (I do have tylenol #3 if needed, but usually just try to take regular tylenol). My doctor talked about Gabapentin (sp) and amitripiline(sp?) but does not want to prescribe anyting else until I see the neuro's at the clinic, he does not want to start any kind of treatment that would prevent them from prescribing something else. Apparently if he gave me one of them then they could not give me other meds they might want to use for up to 2 weeks? I dont know. That is the point, I just dont know. It makes it a bit more difficult to prescribe meds to me as well as I only have one kidney left, I had one removed in 1995, so any meds that could affect my kidney are generally ruled out unless absolutely required. Rules out ALL anti-inflammatories which would be really nice to be able to take at times.
As to the Canadian thing, in reading up on MS, apparently Canada is second only to Scotland with MS occurances in women, and we outnumber men 4-1. Strange? And yes, I am sure they do many unecessary testing here because the pt does not have to pay for it.
Sorry to ramble, having a very frustrating day with this all.
"Battery of tests" is what my doc said. He said the MS Clinic would evaluate me and "do a battery of tests" to see what "stage" I have. From all he said though RRMS is the diagnosis, so what "stage" I have is not clear to me either. There was so much information being thrown at me, it feels like I have bits and pieces and the holes are being filled in HERE by people that actually know what is going on from a pt's point of view. He (doc) did say they would want to see if the lesions were affecting my spinal cord or were confined to my brain. It is all too much right now.
No, as I said before, I am not at this point taking any MS medications. I AM taking a few things for sypmtoms, but not treatment. I take Propanonol for rapid heart rate(most likely from the thyroid though), xanax for panic attacks (as needed, but more lately let me tell you!), and tylenol for pain in my limbs. (I do have tylenol #3 if needed, but usually just try to take regular tylenol). My doctor talked about Gabapentin (sp) and amitripiline(sp?) but does not want to prescribe anyting else until I see the neuro's at the clinic, he does not want to start any kind of treatment that would prevent them from prescribing something else. Apparently if he gave me one of them then they could not give me other meds they might want to use for up to 2 weeks? I dont know. That is the point, I just dont know. It makes it a bit more difficult to prescribe meds to me as well as I only have one kidney left, I had one removed in 1995, so any meds that could affect my kidney are generally ruled out unless absolutely required. Rules out ALL anti-inflammatories which would be really nice to be able to take at times.
As to the Canadian thing, in reading up on MS, apparently Canada is second only to Scotland with MS occurances in women, and we outnumber men 4-1. Strange? And yes, I am sure they do many unecessary testing here because the pt does not have to pay for it.
Sorry to ramble, having a very frustrating day with this all.
ellekay
09-08-2008, 03:25 AM
I know what you mean. Im at home again today not able to get out of bed in the morning. I know that being that time of month isnt helping and the fact that im thalasemic and anemic all at once too.
Im not sure what to do in regards to the whole work thing. Dunno how much longer they will put up with my days off because i cant walk or stay awake at my desk. Its really depressing me.
I managed to get an appt with a neuo for this thursday!!!!!! There was a cancellation so im happy about that.
Could his be all a lack of vitamins? Possibly Vitamine B? But my symptoms are too complicated i think.
Ahhhhhh feel sad :(
Im not sure what to do in regards to the whole work thing. Dunno how much longer they will put up with my days off because i cant walk or stay awake at my desk. Its really depressing me.
I managed to get an appt with a neuo for this thursday!!!!!! There was a cancellation so im happy about that.
Could his be all a lack of vitamins? Possibly Vitamine B? But my symptoms are too complicated i think.
Ahhhhhh feel sad :(
MSNik
09-08-2008, 05:34 PM
Daysma, forgive me for jumping in....but you started this with you didnt know why they wanted to do an LP...Lumbar Punctures, or spinal taps are done to rule out infection, to check for Obands, which are commong in MS patients and to help get closer to a dx..
You also commented that you think they do so many tests because they are free. Id beg to differ on that. Although it must be wonderful to have that sort of comprehsive care. They do so many tests because MS is a diagnosis of ruling out everything else. Blood issues, vitamin deficiencies and Lyme and Lupus & thyroid issues- thru blood work. MRIs show lesions, but lesions can also be from Migranes or prior brain trauma. The size, shape and placement help to determine a MS lesion from another type...LPs can rule out infections such as meningitis and other brain infections, by also showing Obands or not, it also helps to definatively show MS. Tests like EmGs can determine nerve conduction...every test has its purpose, some to help dx MS by looking for specifics and others to rule out specific other diseases.
It IS confusing. And, you are doing the right thing by communicating with people here...this site is a wealth of information and support. One other thing I wanted to mention is their is no MS medication in the sense that it will cure or help with symtoms...nothing gets rid of MS. However, should you decide to do one of the disease modifying drugs like Avonex or Rebif or Copaxone or Betaseron, the purpurse would be to attempt to slow down the progression of the disease, keep new lesions (and thus new symtoms) from forming...its a crap shoot. I think they work, but maybe its just that my disease wouldnt be progressing without it- there is absolutely no way to tell for sure. What I can say, is nothing new has shown on my MRI, I feel better then I did before and Its worth it to me to do it..but its a personal decision.
You also said that you think you have R/R MS but dont know what stage you are in...relapsing remitting MS is the most common type of MS. 85% of people have it; however its not a stage...there is no way to tell if you will always have R/R MS or if you will progress to another form like secondary Progressive...not everyone progresses at all ! Thats the good news. Eating right, keeping an eye on symptoms and exercising properly (i say that because too much is not a good thing) along with getting enough sleep and listening to your body are all key to taking care of yourself.
I know its scary, but we wil help you get thru this...get the tests done, and know that each one brings you closer to a dx!
Nikki
ellekay, congrats on getting your appt moved up! Great news. keep us posted and Im sorry you are having a yuck day!
You also commented that you think they do so many tests because they are free. Id beg to differ on that. Although it must be wonderful to have that sort of comprehsive care. They do so many tests because MS is a diagnosis of ruling out everything else. Blood issues, vitamin deficiencies and Lyme and Lupus & thyroid issues- thru blood work. MRIs show lesions, but lesions can also be from Migranes or prior brain trauma. The size, shape and placement help to determine a MS lesion from another type...LPs can rule out infections such as meningitis and other brain infections, by also showing Obands or not, it also helps to definatively show MS. Tests like EmGs can determine nerve conduction...every test has its purpose, some to help dx MS by looking for specifics and others to rule out specific other diseases.
It IS confusing. And, you are doing the right thing by communicating with people here...this site is a wealth of information and support. One other thing I wanted to mention is their is no MS medication in the sense that it will cure or help with symtoms...nothing gets rid of MS. However, should you decide to do one of the disease modifying drugs like Avonex or Rebif or Copaxone or Betaseron, the purpurse would be to attempt to slow down the progression of the disease, keep new lesions (and thus new symtoms) from forming...its a crap shoot. I think they work, but maybe its just that my disease wouldnt be progressing without it- there is absolutely no way to tell for sure. What I can say, is nothing new has shown on my MRI, I feel better then I did before and Its worth it to me to do it..but its a personal decision.
You also said that you think you have R/R MS but dont know what stage you are in...relapsing remitting MS is the most common type of MS. 85% of people have it; however its not a stage...there is no way to tell if you will always have R/R MS or if you will progress to another form like secondary Progressive...not everyone progresses at all ! Thats the good news. Eating right, keeping an eye on symptoms and exercising properly (i say that because too much is not a good thing) along with getting enough sleep and listening to your body are all key to taking care of yourself.
I know its scary, but we wil help you get thru this...get the tests done, and know that each one brings you closer to a dx!
Nikki
ellekay, congrats on getting your appt moved up! Great news. keep us posted and Im sorry you are having a yuck day!
ellekay
09-09-2008, 07:31 AM
Thanks Nik,
The intial doc appt was in Nov, thats the one my GP ref me to, however with the crap im going through now, i decided not to wait and found another doc who was able to fit me in due to a cancellation, however i need a referal letter from my GP and it doesnt sound like my GP is happy that i went behind his back because now he wants to see me tomorrow. I'll go and see him but i need that referal.!
Today i fell asleep at my desk at work, and then cried but i dont know why.
Elle
The intial doc appt was in Nov, thats the one my GP ref me to, however with the crap im going through now, i decided not to wait and found another doc who was able to fit me in due to a cancellation, however i need a referal letter from my GP and it doesnt sound like my GP is happy that i went behind his back because now he wants to see me tomorrow. I'll go and see him but i need that referal.!
Today i fell asleep at my desk at work, and then cried but i dont know why.
Elle
Bearygood
09-09-2008, 09:30 AM
Daysma, forgive me for jumping in....but you started this with you didnt know why they wanted to do an LP...
You also commented that you think they do so many tests because they are free. Id beg to differ on that.
Nikki, you're responding to a conversation out of context. Ginger said she didn't know why they were doing an LP is response to my question, which I asked because her doctors are sure it's MS.
It was Nenu who then stated that the same thing happened to her, wondered if it was a Canadian thing and if the insurance business could possibly have something to do with a sometimes too free hand in adminstering tests.
Ginger, I hope youi're doing better today.! I can definitely be very overwhelming.
You also commented that you think they do so many tests because they are free. Id beg to differ on that.
Nikki, you're responding to a conversation out of context. Ginger said she didn't know why they were doing an LP is response to my question, which I asked because her doctors are sure it's MS.
It was Nenu who then stated that the same thing happened to her, wondered if it was a Canadian thing and if the insurance business could possibly have something to do with a sometimes too free hand in adminstering tests.
Ginger, I hope youi're doing better today.! I can definitely be very overwhelming.
MSNik
09-09-2008, 01:49 PM
sorry guys...it was confusing, but I was responding to: I dont know why they want to do an LP. This is all so new to me. and then to: And yes, I am sure they do many unecessary testing here because the pt does not have to pay for it. both posted by Daysma.
i guess I was out of order, but I stand behind my answers if that makes any sense....sorry for butting into this one! ;)
Nikki
i guess I was out of order, but I stand behind my answers if that makes any sense....sorry for butting into this one! ;)
Nikki
daysma
09-12-2008, 09:57 AM
Thank you for all that informastion MSNik.
I guess I am still a bit confused. My doc said he is sure I have the RRMS, but then said that the MS Clinic will determine what "stage" I have. Does this then mean it may NOT be RRMS? It could be a different form? Or does he mean they will rule out a different form? SOOOO confusing. I am sorry I am taking up so much of this thread..........but it is so new to me.
I have started to have this weird new sensation. It is really hard to explain. When I am walking, or more so yet, when going up or down stairs, my right thigh feels like it gets a large, wavy band, almost like a river feeling shape, void running across it. It feels like that part of my leg has been pushed away and in and is no longer there. It is not the whole leg or even whole thigh, it does not make me lose balance or anything, it is just a sensation. It is such a weird one though. Does this make any sense, this description? Sorry, I feel like a child learning the alphabet.......and keep getting stuck on C..........lol!
Thanks AGAIN Berrygood for all your info! You have really been awesome!
I guess I am still a bit confused. My doc said he is sure I have the RRMS, but then said that the MS Clinic will determine what "stage" I have. Does this then mean it may NOT be RRMS? It could be a different form? Or does he mean they will rule out a different form? SOOOO confusing. I am sorry I am taking up so much of this thread..........but it is so new to me.
I have started to have this weird new sensation. It is really hard to explain. When I am walking, or more so yet, when going up or down stairs, my right thigh feels like it gets a large, wavy band, almost like a river feeling shape, void running across it. It feels like that part of my leg has been pushed away and in and is no longer there. It is not the whole leg or even whole thigh, it does not make me lose balance or anything, it is just a sensation. It is such a weird one though. Does this make any sense, this description? Sorry, I feel like a child learning the alphabet.......and keep getting stuck on C..........lol!
Thanks AGAIN Berrygood for all your info! You have really been awesome!
ellekay
09-12-2008, 09:03 PM
daysma, maybe when you head down to the MS clinic, they'll be able to shed some light on the situation. Afterall they do specialise in the disease right?
From what i have read with other MS sufferers, is that you dont need to have a positive MRI to be dx with with MS.
Have you undergone any other tests? LP perhaps?
Elle
From what i have read with other MS sufferers, is that you dont need to have a positive MRI to be dx with with MS.
Have you undergone any other tests? LP perhaps?
Elle
daysma
09-15-2008, 01:06 AM
daysma, maybe when you head down to the MS clinic, they'll be able to shed some light on the situation. Afterall they do specialise in the disease right?
From what i have read with other MS sufferers, is that you dont need to have a positive MRI to be dx with with MS.
Have you undergone any other tests? LP perhaps?
Elle
Thanks. I have actually had a second MRI that showed multiple lesions. So, they have given me a definitive diagnosis. I am still not sure the "level" of MS they keep talking about. I was under the understanding it was RRMS. We will have to see what the clinic says.
I just want to send a big thank you out to all of you. You have really helped me through these last few weeks. I felt like I was going insane. Then I found this site and was like WOW..........so many others that know exactly what I am going through, and with such positive attitudes! You are all a really great bunch of people. Thank you for having this forum to come to. It has really informed me and made this journey doable! Thankyou so much!
From what i have read with other MS sufferers, is that you dont need to have a positive MRI to be dx with with MS.
Have you undergone any other tests? LP perhaps?
Elle
Thanks. I have actually had a second MRI that showed multiple lesions. So, they have given me a definitive diagnosis. I am still not sure the "level" of MS they keep talking about. I was under the understanding it was RRMS. We will have to see what the clinic says.
I just want to send a big thank you out to all of you. You have really helped me through these last few weeks. I felt like I was going insane. Then I found this site and was like WOW..........so many others that know exactly what I am going through, and with such positive attitudes! You are all a really great bunch of people. Thank you for having this forum to come to. It has really informed me and made this journey doable! Thankyou so much!
ellekay
09-15-2008, 07:01 AM
Yeah its helped me too. I didnt really know too much about MS but now i know what to expect if/when i am diagnosed with it. Its been pretty scary because whatever it is, its progressing rapidly.
Hang in there.
Elle
Hang in there.
Elle