Ask him then . . . "if the spinal comes back negative for O-bands, is that going to change the dx or treatment options made available to me?" I'd almost bet he says "no".

It seems he is either very old-fashioned (spinal taps haven't been required in years, unless there isn't the type of GLARING evidence that you obviously have), or he is doing some study and using you as a guinea pig.

Spinal taps are invasive, and can be very difficult. Mine put me in the hospital in the brain trauma unit for a week. Of course this is not at all typical!!!!. . . but it happens. The "norm" is that people have at least some amount of unpleasant side-effects though, so why get one if it is not at all necessary?

Steroids are not normally recommended for "sensory" (spinal lesion) attacks, so again this is not necessary. The neuros will give them too you, but they have never proven helpful when the cause is spinal lesion activity. Did you happen to read the thread I posted about JoeMac's experience last summer?

I know how bad you are feeling right now, and my heart goes out to you. These attacks normally escalate over 4 - 6 weeks, then take 4 - 6 weeks to get through the worst of the recovery. Depending on how severe it gets (it may ultimately pan out as minor, moderate or severe), you might not be able to keep on working (or even driving) throughout. Please try to plan for some down time, perhaps 2++ weeks, and to have a support system ready just in case . . .

The mental confusion/brainfog is a very normal part of these kind of attacks too. It is not so much anxiety, although that might play into things too if you are that way inclined. I am not though, and my brain was mush too.

Cherie

Just to give a different perspective, I had a spinal tap and had no problems at all...just a mild back ache for the day. Anything new can be scary, especially diagnostic tests, but just know that not everyone has a terrible time with spinal taps. It's normal to be nervous! Several people have suggested getting a second opinion so perhaps you can avoid it. That's a good idea, regardless.

Finally, let me say something about the number of lesions. I remember when I was first diagnosed and knew nothing about this disease, I was scared to death to find out I had 9 lesions on my brain (and some black holes!). But I remember several people here telling me that it's like "real estate"--it really matters where the lesions are. Some people can have a lot of lesions and very few symptoms or relapses and some people can one lesion and have a lot of problems. Even with all those lesions on my brain I only had a very mild beginning. That was 14 months ago and I haven't had anything new crop up or anything old come back. So I guess my advice is to not get too caught up in the number of lesions because as you are discovering there aren't a lot of answers to this disease.

Good luck with your spinal tap (if you have to have it). It's a stressful time so don't be too hard on yourself. Do something nice for yourself this week.

Natalie

I have 9 in the noggin and 3 on the spine. It's not necessarily the amount of leisons, but where they are that are important. My neuro can pinpoint some of my symptoms by the location of the leisons.

I'm one of those people who had to have the LP during the DX process, recommended by the specialist on staff to try to speed it up. (good ol' McDonald's Critera). Unfortunately it was suspicious for MS, but not conclusive. It wasn't until the next change in my leison load on the MRI that they moved me from CIS to MS because it proved the differences in time and space.

I will admit the LP wasn't fun to have, but managed to avoid the headache that is possible by laying flat on my back for the day. If you do go for the test, try to get someone to drive you there and back to help.

I know this is a stressful time, and stress can do wonky things to symptoms sometimes. Be kind to yourself right now.

I too had no problems with the LP. In fact, the doc went in twice, once in the lumbar area, and when he couldn't get enough fluid, he went in the cervical area!

I felt better after the LP than I had in a long time. I joked with my DH that maybe I needed a spinal fluid letting every few years! Two (almost 3!) years ago my first ever MRI stated that I had lesions consistent with MS. So my PCP ordered the LP. He just said it confirmed what the MRI was saying. Many PCPs don't know any better, I guess!

But I had two different radiologists look at the MRI, the one that wrote the lesions looked consistent with MS, and the other one, a friend, said not necessarily so. It could be, but also may not be. Maybe he was just being nice and trying to help me not worry. He actually did my LP and I'd do another with him in an instant! He was that good and kind.

Hi Legz

I can only really speak from my own experience. Although I have more than seven brain lesions symptomatic of MS, I could not be diagnosed with MS as my spinal tap was negative for O-bands. Henc exploration for other potential causes continues.

I'm surprised to see from a post above that sensory symptoms arise only from spinal lesions - I have a number of such symptoms (numbness, burning, the feeling of cold running water, tingling) without any evidence of spinal lesions.

Don't worry too much about the spinal tap. Although a little uncomfortable, provided you do what they say and remain lying down for as long as they say and then go home and straight to bed till the next day, you should avoid the blinding headache which can otherwise arise.

These will feel like bewildering times - but I'm sure you are in good hands.

Best of luck for tomorrow - let us know how it goes.

Merle

Good luck today, Leggzalot! Hope the testing gives them the answers needed to move forward.

Cherie