They waited two years to do my LP and I had 12 o-bands only in the CSF. They now think I have had MS since early childhood. But PPMS which is what they think I have may show 0 o-bands.
The breaking of axons, which we now know is the first stage of damage in MS, happens before lesion formation. I really think that a person can have MS for several years, and lose axons, before any symptoms present themselves.
So saying that an LP was 'too soon' for a diagnosis is a little close-minded.
However, an LP has been shown to be inconclusive when it comes to diagnosing MS. I think it's a big painful waste of time, myself!
I think that CSF studies, MRI, and clinical exam are all important tools that doctors use to determine the presence of MS with certainty. Early detection is key in MS to reduce the amount of permanent damage. Receiving treatment for MS when the diagnosis is wrong is damaging in many ways.
A number of recent studies found that presence of Oligoclonal Banding improves the accuracy of diagnosis. It was shown to be more accurate specifically because of the need for ‘dissemination in space and time’.
Since between 80-90% of people with MS will have O Bands, it is a useful tool for a doctor that needs to rule out and rule in.
I don’t think that anyone is jumping to do LP’s. It does help guide the physician that knows there is a neurological thing happening but needs to rule out.
My situation is a good example, I have classic MS symptoms, my clinical examination is also classic, the results of my MRI is not certain. I also have a Borderline Chiari I malformation but don’t have Chiari symptoms. My doctor wants to be certain that it is MS and not one of the other diseases that it could be. She wants to treat me but needs the objective data to back it up.
So, I think using all that is available to help each of us and our individual presentation should be used.
Since we are all different, our process will be unique.
Many people have lots of O-Bands at the very beginning of their disease. It is highly variable.
And Jen is right that the LP is only useful for the diagnosis when it is positive. A negative LP means nothing.
So, for us people that are in limbo-land...
When should we get a LP? Should we even get one?
If we do get one and it turns out negative, should we never get one again? Or, if we should, when?
I have often wondered this. I did have one 5 years ago. Actually 2 of them. The first one was not tested right so I had to go back and get another one.
I would prefer to never get one again, to tell you the truth. I don't recall any of the after effects that I see posted here, but I do remember resting afterward. But, I will never forget the procedure. That was the worse part for me.
It has been suggested to me that that an LP done early may not show O bands, My was done 4 months after first symptoms and showed no Obands. I cannot see myself agreeing to have another (4 attempts and a bruise the size of a horses hoof! which I still can see the shading of 5 months later) but I never say never.
My LP was done when I supposedly "wasn't showing any definitive symptoms and never had" (according to my first Neuro). He was very surprised to see 10 bands in my LP lol.
It just seems like everything else with this disease, I hear different reports and paths to diagnosis
I am hoping that it has some diagnostic benefit. I was hoping it would show that I am even in the right ballpark. It really sounds uncertain after reading all the posts.
As far as the procedure I guess I was lucky, I was only stuck once and the fluid drained quickly.
I just want answers to what is happening to me
I feel the same way, RF. That is my biggest concern.
This whole forum has shown me how important it is to be very much involved with your own health care. I really hadn't been. I figured since they were the doctors and went to medical school for this, and I didn't, then they pretty much all knew what they were talking about.
I had already started keeping a medical file but didn't ever REALLY look at my test results and such. Now I am.
With this thread, it got me to wondering exactly what my LP results were. I went looking through my file to see and, lo and behold, I do not have it.
A lot of my initial testing was done in Ohio so now I am going to request my records first thing Monday morning.
On another note, while I was on St. Rita Hospital's web site looking for a medical records number to call, I found that they have a 3.0T MRI machine. So, all you Buckeyes out there, if you are looking for a 3.0T, Lima, OH has one! ;0)
Thanks everyone who took time to reply.
It appears that the "myth" of too soon for an LP has been debunked. Thanks, Mythbusters!
I think that RedFlame put it best with "So, I think using all that is available to help each of us and our individual presentation should be used."