The results are in.... Someone help!
 

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. :mad: :confused:

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?? :confused:

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.

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?:mad:

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

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

Personally in a case like yours, as I did in my case also, I would absolutely seek a second opinion from a MS specialist before having a spinal tap unless you really feel there is a need for one. Unless I've missed something you do not need one to be diagnosed and there really isn't any other information that is to be gained by having it, imo

I have what is called "multiple lesions", sigh. The thing is that counting them isn't an exact science so I try not to get too bent out of shape over it. The count can vary depending on the shot and also who is counting. What I hope to see is that there doesn't appear to be a huge difference in numbers and hopefully none enhancing.

As for steroids, like Cherie pointed out, there are pros and cons. If I'm having a flare that I think will be helped by them and I haven't been taking them very often I prefer to use them in hopes of beating down the damage causing inflammation. Good luck to you. Sadly there are not sure fire answers to most of this stuff.

hi legz

i was dx'd with lesions without an LP.
i had one later as my neuro wanted it. and it just reconfirmed the dx.

the only thing i'm not feeling good vibes about is your dr's attitude.
some docs want LP's and some don't. but he seems to be blowing off your anxieties and concerns. for that reason after this is all over, you might want a 2nd opinion if you can find another dr, or MS specialist.

i'm also one that believes in starting on an MS approved med.
i believe that they help to stop progression and delay any disability.
they don't work for some people. and others just decide they don't want meds.
it's all ok. whatever you decide on.

and it's your body. you're your own best advocate.
i'd suggest that you take a friend or family member with you if possible.
for the support and a 2nd set of ears.

also, why don't you check in with your pcp. my dr is very responsive to my needs. your pcp might be willing to give you a mild anti-anxiety med, even for the short term.

best of luck. try to take a deep breath and take one day and one thing at a time. you're in the right place for advice (varied tho it might be) and support.

oh, ps...
it's not always the # of lesions that's important.
some folks have lots of lesions and few sx's. and some folks have a few lesions and many sx's.

so, try not to be too anxious about the #.
you might ask your dr if they're enhancing lesions. that would be you have active disease going on. that may be why he wants to give you the steroids.
:hug:

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. :cool:

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. :hug: 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. :hug: :hug: :hug: :hug:

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. :Sigh: 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. :hug::hug:

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