parisiancat
02-23-2009, 05:55 PM
I need to vent. I had my neuro appointment today - six month check up and mri (2 years since last one) results.
I don't even know where to start. First I saw the MS specialist nurse. Which was fine, she's very nice and really knows alot. I told her that I've been having a lot of flare ups over the last six months and new symptoms for the last two months. She confirmed - relapse.
Then she looked at my mri scan (taken in Dec) and saw immediate and obvious inflammation. And warned me that the disease is very active and when I spoke to the neuro he would probably want to start me on DMD.
Now here's where it gets annoying. The radiologist messed up and 1. didn't give me contrast and 2. did not take scans of my spine, even though my orignal mri found 2 lesions on my spine. So i now don't know how many lesions I have or the extent of activity. I just know that there are three imflammed spots that showed up without contrast.
So she went to talk to the neuro and then I went to see him. I have always been told that my dx is 99%. Until I has a second relapse they wouldn't say 100%.
But I also found out today that although my spinal tap tested positive for obands, no bloods were tested at the same time so they couldn't compare - obands in the blood at the same time as in the csf is not ms, it indicates an infection.
Now I have to bring in my last mri scans (taken at a different hospital, I forgot to bring copies with me today) and the neurologist will present my case at a meeting of neurologists and radiologists. If everyone there thinks ms then I will be given a dx and (from what it sounds like) pushed towards DMDs. If not, there is the posibility of a second spinal tap.
I will also be given another mri, properly this time. Today also I had full bloodwork done, some tests such as lyme were missed the first time.
The neuro said at the end that I have classic ms symptoms and he is still 99% sure but doesn't want to move forward with so many loose ends.
Now I don't want to start on DMDs, although I know that I should. And I would love to be told that MS was a mis diagnosis. But 2 years after initial dx I feel like I'm going through it all over again. And if I'm honest, it's making me confront things that I had become very good at ignoring.
It's all so frustrating. The result of an understaffed and overpopulated health system. I attend an ms clinic in a public hospital and today was the first time in 2 years that I saw the same doctor again. On the up side I really like him and I think he wants to get to the bottom of it and is genuinely exploring every possiblilty, rather than just going with what the previous doctors have said.
Anyway, the meeting is next Monday so we'll see what happens and go from there.
Thanks for listening.
Cat
I don't even know where to start. First I saw the MS specialist nurse. Which was fine, she's very nice and really knows alot. I told her that I've been having a lot of flare ups over the last six months and new symptoms for the last two months. She confirmed - relapse.
Then she looked at my mri scan (taken in Dec) and saw immediate and obvious inflammation. And warned me that the disease is very active and when I spoke to the neuro he would probably want to start me on DMD.
Now here's where it gets annoying. The radiologist messed up and 1. didn't give me contrast and 2. did not take scans of my spine, even though my orignal mri found 2 lesions on my spine. So i now don't know how many lesions I have or the extent of activity. I just know that there are three imflammed spots that showed up without contrast.
So she went to talk to the neuro and then I went to see him. I have always been told that my dx is 99%. Until I has a second relapse they wouldn't say 100%.
But I also found out today that although my spinal tap tested positive for obands, no bloods were tested at the same time so they couldn't compare - obands in the blood at the same time as in the csf is not ms, it indicates an infection.
Now I have to bring in my last mri scans (taken at a different hospital, I forgot to bring copies with me today) and the neurologist will present my case at a meeting of neurologists and radiologists. If everyone there thinks ms then I will be given a dx and (from what it sounds like) pushed towards DMDs. If not, there is the posibility of a second spinal tap.
I will also be given another mri, properly this time. Today also I had full bloodwork done, some tests such as lyme were missed the first time.
The neuro said at the end that I have classic ms symptoms and he is still 99% sure but doesn't want to move forward with so many loose ends.
Now I don't want to start on DMDs, although I know that I should. And I would love to be told that MS was a mis diagnosis. But 2 years after initial dx I feel like I'm going through it all over again. And if I'm honest, it's making me confront things that I had become very good at ignoring.
It's all so frustrating. The result of an understaffed and overpopulated health system. I attend an ms clinic in a public hospital and today was the first time in 2 years that I saw the same doctor again. On the up side I really like him and I think he wants to get to the bottom of it and is genuinely exploring every possiblilty, rather than just going with what the previous doctors have said.
Anyway, the meeting is next Monday so we'll see what happens and go from there.
Thanks for listening.
Cat
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MSJayhawk
02-23-2009, 06:49 PM
First thing is not to worry. You do not need the LP because it may not work for you. I had an LP done and in over 26 years, I have never been positive.
Blood work should have been the first thing to do in order to rule out Lyme. If you decide to use DMDs, I would not unless you had Lyme ruled out.
Now, as to your MRI, eons ago (1982) I was tested by the "new-fangled" Magnetic Wave machine. Contrast was not used, but lesions were clearly visible. That you have ongoing, active lesions is more important than the exact number. Often lesions might not be seen without the use of contrast- but you need not go through another MRI if your doctor can see the lesions.
You are more blessed than you might realize. Stay positive, you are going to be fine. :angel:
Blood work should have been the first thing to do in order to rule out Lyme. If you decide to use DMDs, I would not unless you had Lyme ruled out.
Now, as to your MRI, eons ago (1982) I was tested by the "new-fangled" Magnetic Wave machine. Contrast was not used, but lesions were clearly visible. That you have ongoing, active lesions is more important than the exact number. Often lesions might not be seen without the use of contrast- but you need not go through another MRI if your doctor can see the lesions.
You are more blessed than you might realize. Stay positive, you are going to be fine. :angel:
MSNik
02-23-2009, 07:18 PM
Hey Cat I hope by now you are feeling alittle calmer- I heard both rage and frustration in your post (and they were well deserved)- BUT I think you already know what is happening here.
Yes, you have ignored the obvious for the past two years- and guess what? You could actually continue to ignore it and wait until you cant stand it anymore before you persue this further. Its not like if it is MS that youre going to die from it, right? And although I feel your pain that they didnt do the MRI correctly- the simple fact that there is obvious disease activity going on is why I think that your in for your answer, real soon! Having the correct MRi with contrast, in the right areas, is going to be really important. Having the blood work done is also important- even ruling out deficiencies like B vitamin deficient- will help them limit the possiblities of what else it could be.
your doctor sounds ok, really. He isnt jumping the gun to do anything, and yet the nurse seems to be fairly sure that your headed that way....am I getting this right? DMDs are personal. As you know ive had much success on them...but as you also know others have had just as much success WITHOUT them. You do have a choice. Just like you have the choice to live with MS and ignore the symtoms you have been having the past few months or accept the diagnosis and deal with it. Dealing with it is actually SO MUCH easier when you know what you are dealing with!
Cat you have been with us for so long and you always seem to "land on your feet" (typical kitty!) Youre going to get thru this, too. I promise. VENT AWAY and let it all out! But as for worrying now about a misdiagnosis, I wouldnt put yourself thru that....its not highly likely. Did they say how long it would take to get the Lyme test back? It took me 10 days....and as for doing a LP a second time- I had two of them myself...both were conclusive for Obands, and at the time there were no signs of infection in my WBC or blood in any other way...they considered me positive for MS via LP..along with the 50 plus lesions I had on my MRI.
Worry not cat....whatever is going on has taken so long to start showing- nothing is going to happen overnight....when and IF you get the formal dx, we can talk turkey about pros and cons of DMDs...ok? Until then, have a really good week. Be good to yourself..and try really hard, to relax. We are here if you need us..
nikki
Yes, you have ignored the obvious for the past two years- and guess what? You could actually continue to ignore it and wait until you cant stand it anymore before you persue this further. Its not like if it is MS that youre going to die from it, right? And although I feel your pain that they didnt do the MRI correctly- the simple fact that there is obvious disease activity going on is why I think that your in for your answer, real soon! Having the correct MRi with contrast, in the right areas, is going to be really important. Having the blood work done is also important- even ruling out deficiencies like B vitamin deficient- will help them limit the possiblities of what else it could be.
your doctor sounds ok, really. He isnt jumping the gun to do anything, and yet the nurse seems to be fairly sure that your headed that way....am I getting this right? DMDs are personal. As you know ive had much success on them...but as you also know others have had just as much success WITHOUT them. You do have a choice. Just like you have the choice to live with MS and ignore the symtoms you have been having the past few months or accept the diagnosis and deal with it. Dealing with it is actually SO MUCH easier when you know what you are dealing with!
Cat you have been with us for so long and you always seem to "land on your feet" (typical kitty!) Youre going to get thru this, too. I promise. VENT AWAY and let it all out! But as for worrying now about a misdiagnosis, I wouldnt put yourself thru that....its not highly likely. Did they say how long it would take to get the Lyme test back? It took me 10 days....and as for doing a LP a second time- I had two of them myself...both were conclusive for Obands, and at the time there were no signs of infection in my WBC or blood in any other way...they considered me positive for MS via LP..along with the 50 plus lesions I had on my MRI.
Worry not cat....whatever is going on has taken so long to start showing- nothing is going to happen overnight....when and IF you get the formal dx, we can talk turkey about pros and cons of DMDs...ok? Until then, have a really good week. Be good to yourself..and try really hard, to relax. We are here if you need us..
nikki
april1848
02-23-2009, 08:17 PM
Goodness, I can't imagine how it feels to be unsure of a dx after a few years. But there's no need to worry, although I certainly get your frustration!! Please let us know what happens when you get back to your doctor. At least it sounds like he's doing everything he can to figure it out!
22dreams
02-23-2009, 08:38 PM
I'd just like to interject here -- and
by no means do I wish to add to the frustration & worry you've endured---
but, unfortunately, Lyme disease cannot be ruled out by the current laboratory tests that are available. Lyme is a clinical diagnosis. Most doctors within our overburdened medical system are not savvy. Only Lyme-literate doctors can rule lyme out or in.
I hope you find the diagnosis that will assuage your fears and treatment that will make your life more livable.
by no means do I wish to add to the frustration & worry you've endured---
but, unfortunately, Lyme disease cannot be ruled out by the current laboratory tests that are available. Lyme is a clinical diagnosis. Most doctors within our overburdened medical system are not savvy. Only Lyme-literate doctors can rule lyme out or in.
I hope you find the diagnosis that will assuage your fears and treatment that will make your life more livable.
MSNik
02-23-2009, 10:08 PM
22 dreams, although you are right in most respects, more and more labs are becomming aware of Lyme testing. In the USA, IgeneX is the lab of choice for sending blood work to rule out or dx Lyme Disease. In Europe, where Cat lives, there are even more good labs....the testing in the US has shown that there are too many false negatives and positives; taking our cue from Europe, we have started developing more and better testing resources to get the results right! What you brought up is a good point, but Cat- just double check with your doc that the results are 100% accurate- and how he knows this for sure....youve had some of these symtoms for so long that Im willing to bet that you would have known if it was Lymes by now. My thoughts are that there is almost no possible way you could have lived with Lymes this long and not known it- the symtoms although similar are hardly the same and advanced Lyme disease comes with its own sort of issues, none of which you have ever described.
Best of the best to you. And stop worrying!
nikki
Best of the best to you. And stop worrying!
nikki
22dreams
02-23-2009, 11:45 PM
22 dreams, although you are right in most respects, more and more labs are becomming aware of Lyme testing. In the USA, IgeneX is the lab of choice for sending blood work to rule out or dx Lyme Disease. In Europe, where Cat lives, there are even more good labs....the testing in the US has shown that there are too many false negatives and positives; taking our cue from Europe, we have started developing more and better testing resources to get the results right! What you brought up is a good point, but Cat- just double check with your doc that the results are 100% accuratei
Yes, my intention was to bring up the point that no test is 100% accurate and that seeing a lyme-literate doctor to rule it - definitely--out or in is necessary. Unfortunately, neither IgeneX in the U.S. or labs in Europe, have the capacity to diagnose lyme via a blood test in every case.
Tests are not sophisticated enough to actually detect the lyme bacteria in the blood. Not yet anyway. They test for antibodies. and if the immune system is suppressed, with current testing, the results will we negative even when the bacteria is present.
I don't know Cat's full story. Just wanted to clarify the issue about lack of adequate testing.
Cheers.
Yes, my intention was to bring up the point that no test is 100% accurate and that seeing a lyme-literate doctor to rule it - definitely--out or in is necessary. Unfortunately, neither IgeneX in the U.S. or labs in Europe, have the capacity to diagnose lyme via a blood test in every case.
Tests are not sophisticated enough to actually detect the lyme bacteria in the blood. Not yet anyway. They test for antibodies. and if the immune system is suppressed, with current testing, the results will we negative even when the bacteria is present.
I don't know Cat's full story. Just wanted to clarify the issue about lack of adequate testing.
Cheers.
parisiancat
02-24-2009, 06:10 PM
Thanks everyone! I feel much calmer and more rational today.
Bottom line is that in terms of symtoms I feel no different today than since before seeing the doctor. I still have constant symptoms but nothing that I haven't been able to funtion and live with. So I'm having a relapse. But it's not a bad one, I'm still working fulltime, going out with friends at weekends (although I do have to come home and have a nap afterwards!)
I really don't expect a different diagnosis. I think the neuro is being cautious. And it gives me time to really think seriously about DMD and have some perspective rather than making a decision in the kind of stressed unrational mood I was in yesterday.
Thanks again for the support. i will let you you know the outcome.
Cat
Bottom line is that in terms of symtoms I feel no different today than since before seeing the doctor. I still have constant symptoms but nothing that I haven't been able to funtion and live with. So I'm having a relapse. But it's not a bad one, I'm still working fulltime, going out with friends at weekends (although I do have to come home and have a nap afterwards!)
I really don't expect a different diagnosis. I think the neuro is being cautious. And it gives me time to really think seriously about DMD and have some perspective rather than making a decision in the kind of stressed unrational mood I was in yesterday.
Thanks again for the support. i will let you you know the outcome.
Cat