Same Test, Different Results???

[Audrey_M]

To LP, or not to LP, that is the question.

I'm wondering how many people have had a repeat LP and gotten different results with another CSF analysis, either positive O bands or a high IgG index? It seems that maybe Sarah'smom did, but I can't find anyone else.

The reason I ask is that I was seen by Yale last week, as my symptoms are progressing and I am still without a diagnosis. Abnormalities were again noted in the neuro exam, with balance getting worse (couldn't do the heel to toe walk without falling to the right, so no Romberg test this time), also abnormal plantar's refex, sustained right ankle clonus, took me a long time to find the word for the tip of a pen and I could not recall three words.

Several years ago, another neuro at Yale suggested that alcohol was responsible for cerebral atrophy. I am no longer drinking and I did discuss my alcohol history during the recent appointment. My consumption was heavy by medical standards, but the doctors did agree that one would not expect to see the degree of damage I have incurred. I also noted that my alcohol consumption increased after I began having neurological symptoms.

I was asked to consider having another LP done, as Yale's testing is "more sensitive". I have an appointment to discuss this with my PCP on September 24th. Given that 5 to 10% of definite MS patients do not show positive O bands, I am really unsure of whether or not I should be retested. If test results were to come back negative, Yale said we are at the end of the neuro line and rheumatology would be the next step.

Albert Einstein comes to mind with his definition of insanity: doing the same thing over and over again and expecting different results.

Frustrated does not begin to describe how I feel. It's now time to get my PCP more involved in this until I get some kind of diagnosis. Right now, I am at the point of disability...

[nana68]

I have mirror pattern oligoclonal bands and myleotic quadriparesis and since I have two juxticortical lesions the neuro is almost ready to say that its ms. I just am afraid of the stuff he wants me to take..copaxone I have heard causes worsening axiety and I already have a history of panic disorder. Avonex I have heard lowers the immune system and I already have had respiratory failure a couple years ago and well tysrabi I won't do that one at all. I wanted to try low dose naltroxene but my neuro says that won't help.

[Ricobord]

"According to Yale, Lyme is way over diagnosed."

Where do I start?  Yale's Lyme group is one of the most despised institutions in the country among Lyme advocates and late stage and chronic Lyme patients.  Yale has no numbers whatsoever to justify their insistence that Lyme is "way over diagnosed."  They continue to insist that those of us who test negative on the CDC surveillance criteria (developed for sampling purposes) and have lots of Lyme symptoms actually have some other unknown, undiagnosable condition for which they will give only palliative care. After other known possibilities have been considered, of course.

Yale's Lyme group continues to deny actual scientific evidence that people can test false negative for Lyme Disease, that neurologic Lyme is far more common than they acknowledge, and that Lyme-carrying ticks are far more widespread than 30 years ago. They still insist that there are 20,000-30,000 cases a year, when even the CDC says the actual case count is more likely TEN times that amount.

Just last spring a Yale doc published a Lyme Disease risk map stating that any positive results in the South should be considered negative, unless the patient was exposed in a "highly endemic area."  And yet a study by their own (formerly of Yale) Lyme identifying Dr. Allen Steere proved that false positives are indeed very rare. In a 2008 study, the only false positive was in a healthy, asymptomatic control patient. All patients with Lyme symptoms who tested positive had Lyme. Explain that to long suffering Lyme patients in the South who can't get diagnosed thanks to publications like this!

Sorry... I don't mean to derail a conversation about searching for a dignosis. It is a difficult and frustrating process. Before I went through it myself, I had no idea there were so many people, and so many possible conditions that could lead to such lengthy processes.  I know the fear and the frustration and the physical suffering of it.

I am also frustrated with doctors and institutions who are stuck in an old and outdated mentality when opinion got confused with fact. Their unwillingness to admit wrong is apparent in their unsupported statements and refusal to acknowledge studies and evidence that contradicts their beliefs.

I am surprised and disappointed to see how many MS and possible-MS patients have experienced this as well. Finding the right doctor seems to be a significant challenge. Shall I make a tired reference to kissing a lot of toads...? ;)

Note: I believe that Yale has many other fine medical clinics and doctors, and their medical school is highly regarded. My comments are restricted to their Lyme clinic. Unfortunately, the Infectious Disease doctors' beliefs are disseminated to other specialists there, who follow their lead in making sure they don't "overdiagnose" Lyme. In a nutshell, if you want to exclude Lyme, go to an LLMD, someone familiar with the disease and its many manifestations. There are no LLMDs at Yale. Lyme, like MS is ultimately a clinical diagnosis.

[vamanos]

I understand your frustration, I was just dx this week, and would have been with or without the csf test.

[tina21067]

Hi Audrey,  

They said I was negative for Lyme in my CSF, but from what I have read it is very difficult to obtain Lyme from the fluid.

Either way, I am interested in what Yale says about their lab and how they differ from say Quest or Labcorp?  I have been having all of my bloodwork done at Yale recently since they opened a satellite blood drawing station virtually right around the corner from me.  Did you like the neuro you saw recently?  I was a little upset to see a neuro resident, but they brought in a more experienced neuro at the end of the visit who examined me as well.  Wardinger I think was that doc's name.

[Audrey_M]

Thanks to all who responded.

Jen: the LP was done 5/2010 at Middlesex Hospital; Quest Diagnostics processed the samples. It is my understanding that Yale has its own lab. I have no history of ON, so an optical coherence tomography test would most likely show nothing?

Tina: I was seen by General Neurology. With your prior LPs, didn't they test for Lyme?

Alex and Lulu:my concern is that I will not show any O bands or a high IgG index.

I really do not know what to think at this point and I'm at a loss to understand why the McDonald Criteria is not applied. I have at least 6 T2 lesions (see first pix in my profile) and the flair images show even more. I have lesions in areas that are specific to MS; periventricular, juxtacortical and in the corpus callosum.

It seems to me that the criteria of dissemination in time and space has been met, but the neurologists I have seen have not reached that conclusion.

No lesions were noted in the 2009 MRI of my spinal cord done on a T1.5 machine. I would prefer an MRI of the spine on a T3 machine over another LP, but I am not sure if Yale would view spinal cord lesions as evidence for a diagnosis?

I have to put together a comprehensive list of questions to ask my PCP, so that we can get to the bottom of this. I am getting scared with the deterioration I am seeing and no diagnosis.

[Lulu54]

Alex is right - once there, they do not go away.  Remember that 10-15% of people with MS do not have LP o-bands.  That is a significant number and a good MS neurologist will acknowledge that.

Good luck with the decision.
Lulu

[HVAC]

It was explained to me that O-bands are like tree rings. They will not go away but you can develop more ( or some ) later if you have something like MS. Some people do not. I was told they would keep doing LPs on me until I had a positive result. I luckily had 12 O-bands on the first one so I was finally diagnosed because of the LP after two years of other tests. My results were sent to 4 labs including the Mayo.

Alex

[vamanos]

I had a csf test in July after my neuro told he suspected I had ms.

My result was negative, yet my neuro continued to suspect ms. He ruled out other causes--my MRI showed lesions that looked like ms lesions, and were in an area suggestive of ms.

So, my diagnosis did not change either way because of the csf test. In my case, the csf test was useful for my neuro, but not the determining factor.

My neuro said that the csf test is just one more piece of data. Ask yourself how much your doctor needs that data to move forward, and if you think it will be beneficial. My neuro also said that csf tests may be negative earlier in the disease process...

Have you had an MRI?

[tina21067]

Are you going to the MS clinic at Yale?  I am scheduled there in November with Dr. Pelletier.  Saw a Yale neuro resident about 2 weeks ago and had all of my MRI's done there.  2 out of my 3 spinal taps have been there as well.  I haven't heard there lab is more specific??  Hope that is true because my spinal taps were all negative so far.

Wondering if I am harboring Lyme or if it is MS....According to Yale, Lyme is way overdiagnosed.  

[jensequitur]

Where was your first spinal tap done, and who processed the samples?  When mine was done, the spinal fluid was taken, and then sent to a lab that could process it.  Yale might have the facility for it, but I have to ask how different their processing is, if it's picking up something that the other lab did not.

Personally I would ask for an optical coherence tomography test.  This will measure the thickness of your retinal nerve tissue, and spot atrophy that won't be visible on an MRI.