So I called my neuro to get the MRI results. He says the radiologist is reading more than he is counting. He is counting 7 lesions in my brain to go along with the 4 on my spine I have to go in sometime before tuesday to get the spinal tap because on tuesday he wants to start steroids to see if he can get the swelling down to try to stop the numbness.

So I am freaking out here. Are these numbers normal? It seems like an awful lot of lesions. But I don't know how many lesions does one typically get with MS?

There is nothing typical when it comes to MS. You will find those that have more lesions than you and those that have less.

Unfortunately, lesions are normal with MS. Multiple, meaning many and Sclerosis, meaning scaring (lesions).

It sounds like you have MS but, you really need to talk to your neuro for confirmation.

Seven brain lesions is not a lot, compared to many of us. A friend of mine's son, who was 13 at the time, presented initially with over 100 lesions.

Sure sounds like a slam-dunk dx for MS to me. From your results, there appears ABSOLUTELY no reason to get a spinal tap at this point though.

Steroids are used to hasten recovery, but have no affect on the disease process. Some people use them to hopefully get over some symptoms quicker . . . but the potential short and long-term risks (PROs and CONs) must be weighed up too.

Cherie

Why on earth is he making you have a spinal tap??

I've never had one...I was dx on an MRI alone because it did show lesions. And less than 7!! I now have more than 7 but to begin with it was less. I would imagine if there were no lesions presenting then maybe an LP would be in order but I disagree with him on this.

Is your neuro saying that he will not issue a dx without an LP?

He's been insisting on the spinal from the beginning. Now he wants to do it before tuesday b/c he wants to start steroids and he doesn't want he steroids to effect the spinal.I am not too worried about getting the test, i am used to pain, but all of this has happened so fast.

The results from the first MRI came in on halloween. And if the steroids will help with the numbness, then I am ok with it, but I am beyond stressed and have been for the last 2 weeks to the point it hurts to sit stand lay down. When i sleep i wake up feeling like all of my joints and my spine were frozen overnight and they do not want to cooperate. And he is not offering any anti anxiety meds or anything for the pain. And the 45 mile commute each way sucks when you can't feel the pedals and I swear I have spent the last week staring at my computer screen and zoning out I cannot seem to focus on anything lately and I know it's the stress.

The other thing I am confused about is he says the radiologist that read the MRI is counting more than he is seeing so I don't even know if 7 is accurate. I pick up my copies of the MRI on Tuesday, or whatever day they do the spinal.There is no definite anything with this disease and I feel like a lab rat.

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

Seven? That doesn't sound too bad. How big are they?

As you can tell...I got a lot. What do you mean you could tell?

(Don't worry about the size or number.)
(strange...same thing I told DH! Ha!)

I have no idea how big they are. I know nothing. I am so fliipin confused.