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Mayo Clinic o-band criteria for diagnoses
I am interested to find out why and how the Mayo Clinic uses the 3 band criteria that it uses when others do not use this? I talked to a man today who told me that the Mayo clinic did not dx him and it took 10 years to finally get his dx.
I agree with Melissa that neuros should have to keep track of their patients that have neg results to see if they are ever diagnosed with ms/
flowerfloosey
I agree with Melissa that neuros should have to keep track of their patients that have neg results to see if they are ever diagnosed with ms/
flowerfloosey
Thanks for your usual insightfulness here on the forum. In reading Julie's post..I am shocked because of my experience with the Mayo neuro. As I stated before..I went to Mayo for either a confirmation or different dx. The doc completely downplayed the lp results having his nurse call me with the results of my "blood work" and not even mentioning my lp results which is what was so positive for 6 years(12) bands in csf only with 3 lp's, and why I went there in the first place. I had to ask her specifically for the results and she acted llike it was an afterthought. From what you read..I can now completely understand the politics behind this problem at Mayo and why I was treated the way I was. I should have never spent the time, energy and money to go there and I would NEVER recommend anyone going there for a MS like problem for dx. I went to the wrong place to have any chance of sifting thru this mess! VERY FRUSTRATING! Why should our health have to be mixed in with a political agenda?? UGH! My experience is VERY CLEAR NOW!
My MS doctor talked about a LP but said I had enough other stuff to make a dx.
This past year has been progressive so I am not certain he is sticking with the RRMS.
I may get that question answered at my next appointment. He has checked me from head (psychiatrist) to toe to see why I am progressing. Everything is coming back fine.
I would do an LP if he thought it would help but I am already on Avonex so I guess what is the point.
It is crazy and frustrating and I am SO GRATEFUL I found a wonderful MS clinic that did not leave me chasing my tail.
LA
This past year has been progressive so I am not certain he is sticking with the RRMS.
I may get that question answered at my next appointment. He has checked me from head (psychiatrist) to toe to see why I am progressing. Everything is coming back fine.
I would do an LP if he thought it would help but I am already on Avonex so I guess what is the point.
It is crazy and frustrating and I am SO GRATEFUL I found a wonderful MS clinic that did not leave me chasing my tail.
LA
I was finally diagnosed and am starting a DMD and I have 12 o-bands. The MS Specialist said I had MS but if the LP was negative he would not give me DMDs because they would stop the progression. He was looking for something more dramatic like not being able to stand or going blind ( his words). Thank goodness for the LP changing his mind. Something in my blood work done Thursday has made him think the disease has progressed more than he thought in the last two years, as well.
I think the LP like the MRI is a only a tool. It is up to a good neurologist to put many pieces of the puzzle together. No case is the same. Because MS behaves differently in different individuals. We are not the same.
Alex
I think the LP like the MRI is a only a tool. It is up to a good neurologist to put many pieces of the puzzle together. No case is the same. Because MS behaves differently in different individuals. We are not the same.
Alex
Hmm, a negative LP can go different directions. While a lot of O-Bands is seen in people with a lot of inflammatory activity, people with PPMS only have O-Bands at all about 60% of the time.
So, if you are clearly RRMS then a lower band count might indicate a less progressive course "now."
I have read the same thing, but I am not sure if this holds up in the long run - qo years or more down the line. We could ask Dr. Kantor.
Quix
So, if you are clearly RRMS then a lower band count might indicate a less progressive course "now."
I have read the same thing, but I am not sure if this holds up in the long run - qo years or more down the line. We could ask Dr. Kantor.
Quix
When I spoke to my neuro (ms specialist) about my negative lp, he mentioned something to the effect that you don't need a positive lp for a dx and that having MS with a negative lp was thought to actually be a sign for a less progressive course. I haven't read this in any of my research. Have any of you heard of this?
Here's my story with the Mayo lab who processed my LP fluids -
I had my first LP last May when I had an acute neurologcial event. The hospital internist was the first to give me the results and commented that there were 2 bands in the CSF. When I asked what that meant, he said if you have more than one then it could be MS, but said to ask the neuro. A few hours later the neurologist (evil first neuro) came to see me and didn't mention a thing about the o-bands or MS or anything.
I didn't know a thing about o-bands and didn't give it much more thought until I got a copy of my hospital records and saw the CSF report. The test report (done by Mayo) came back with 2 o-bands. The report read that the results were negative for MS since it was less than 4 bands.
Then, I found out about this forum and asked you fine people what this meant. When I had my next appointment with that neruo I asked about the o-bands in my CSF. He said he talked to the pathologist at Mayo about it and then told me it was considered negative. I tried to ask about why someone would have o-bands in their fluid and if that meant anything and he told me verbatum "the test was negative - Period!" He had the nerve to even ask "how I knewe about the o-band test results" and I said a hospital doctor told me. He immediately wanted to know "who" that doctor was. He was ticked off. What was up with that?
Anyway, The report from the Mayo was also very confusing. In my case they stated there were 2 bands in my CSF and 2 bands in my serum AND it also stated that there were 2 bands in the fluid that were not in the serum. Now either someone at Mayo had one to many drinks when they were writing up the report and made an error or they didin't state the number of bands correctly, which should have read perhaps 4 bands in the CSF and 2 in the serum. Who knows, but it shows me that Mayo is either not on the ball when they run these tests for other hospitals or becaue it was less than their criteria of 4 bands, then who cares negative = negative.
My points here are that Mayo makes mistakes and their MS criteria is only unique to them. This hurts us the patients, which was stated earlier, as it can keep us from getting a diagnosis and also treatment.
I would like to think that doctors who see o-bands in a patient's CSF will not pay any attention to what is said on a report and use their own judgement. Bands are bands and they should not be disregarded because there was one less than a particular lab's "criteria" for dx MS.
--Julie
I had my first LP last May when I had an acute neurologcial event. The hospital internist was the first to give me the results and commented that there were 2 bands in the CSF. When I asked what that meant, he said if you have more than one then it could be MS, but said to ask the neuro. A few hours later the neurologist (evil first neuro) came to see me and didn't mention a thing about the o-bands or MS or anything.
I didn't know a thing about o-bands and didn't give it much more thought until I got a copy of my hospital records and saw the CSF report. The test report (done by Mayo) came back with 2 o-bands. The report read that the results were negative for MS since it was less than 4 bands.
Then, I found out about this forum and asked you fine people what this meant. When I had my next appointment with that neruo I asked about the o-bands in my CSF. He said he talked to the pathologist at Mayo about it and then told me it was considered negative. I tried to ask about why someone would have o-bands in their fluid and if that meant anything and he told me verbatum "the test was negative - Period!" He had the nerve to even ask "how I knewe about the o-band test results" and I said a hospital doctor told me. He immediately wanted to know "who" that doctor was. He was ticked off. What was up with that?
Anyway, The report from the Mayo was also very confusing. In my case they stated there were 2 bands in my CSF and 2 bands in my serum AND it also stated that there were 2 bands in the fluid that were not in the serum. Now either someone at Mayo had one to many drinks when they were writing up the report and made an error or they didin't state the number of bands correctly, which should have read perhaps 4 bands in the CSF and 2 in the serum. Who knows, but it shows me that Mayo is either not on the ball when they run these tests for other hospitals or becaue it was less than their criteria of 4 bands, then who cares negative = negative.
My points here are that Mayo makes mistakes and their MS criteria is only unique to them. This hurts us the patients, which was stated earlier, as it can keep us from getting a diagnosis and also treatment.
I would like to think that doctors who see o-bands in a patient's CSF will not pay any attention to what is said on a report and use their own judgement. Bands are bands and they should not be disregarded because there was one less than a particular lab's "criteria" for dx MS.
--Julie
My guess is this: the Mayo has long been outspoken that they believe the diagnosis of MS is made too often and too quickly. They are the ones who were advocating "withholding" a DMD if the patient appeared to have "Benign" MS. The research in the field proved that this was foolhardy, because the DMDs are most effective the earlier in the disease they are used. Also, there has been a huge push to abolish the concept of MS ever truly being benign.
I think their reaction to the disapproval is to approach the problem from another direction and to make the diagnosis "harder" to arrive at. So, while the rest of the world feels that 2 or more O-Bands is sufficient to point toward MS, they have chosen 4 or more.
The arguments they put forth in defense of holding off on treating the person with CES or with supposedly benign MS were mostly economic. They stated that a person with mild symptoms is less likely to be non-compliant with the meds. They state the great cost for someone who "likely" isn't going to get very bad. They are also concerned that a person with another disease will be misdiagnosed and possibly suffer great harm.
My argument for the first argument is that compliance is directly related to education about the disease and follow up. To the second, well, unless they are someone who is walking in the shoes of "mild brain damage," the "you're not bad enough to qualify for the expense," doesn't hold water. The misdiagnosis argument is the best, and all effort should be put to making reasonable assurances that the person is properly diagnosed.
I think the the 4 O-Bands is part of an ideological/economic agenda. My personal opinion.
Yes, there should be some feedback of a neuro's "statistics" in these cases.
The whole 4 O-Bands seems silly considering the decreasing role that LP are playing in the diagnosis anyway.
I'm becoming very anti-Mayo. HOLD THE MAYO!!
Quix
I think their reaction to the disapproval is to approach the problem from another direction and to make the diagnosis "harder" to arrive at. So, while the rest of the world feels that 2 or more O-Bands is sufficient to point toward MS, they have chosen 4 or more.
The arguments they put forth in defense of holding off on treating the person with CES or with supposedly benign MS were mostly economic. They stated that a person with mild symptoms is less likely to be non-compliant with the meds. They state the great cost for someone who "likely" isn't going to get very bad. They are also concerned that a person with another disease will be misdiagnosed and possibly suffer great harm.
My argument for the first argument is that compliance is directly related to education about the disease and follow up. To the second, well, unless they are someone who is walking in the shoes of "mild brain damage," the "you're not bad enough to qualify for the expense," doesn't hold water. The misdiagnosis argument is the best, and all effort should be put to making reasonable assurances that the person is properly diagnosed.
I think the the 4 O-Bands is part of an ideological/economic agenda. My personal opinion.
Yes, there should be some feedback of a neuro's "statistics" in these cases.
The whole 4 O-Bands seems silly considering the decreasing role that LP are playing in the diagnosis anyway.
I'm becoming very anti-Mayo. HOLD THE MAYO!!
Quix
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