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Old 11-12-2008, 07:25 PM #1
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Default 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?
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Old 11-12-2008, 07:55 PM #2
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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.
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Old 11-12-2008, 08:02 PM #3
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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.

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Old 11-12-2008, 08:12 PM #4
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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?
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Old 11-12-2008, 08:21 PM #5
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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.
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Old 11-12-2008, 08:21 PM #6
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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!)
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Old 11-12-2008, 08:43 PM #7
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I have no idea how big they are. I know nothing. I am so fliipin confused.

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Originally Posted by Taffy View Post
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!)
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Old 11-12-2008, 09:00 PM #8
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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.
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Old 11-12-2008, 09:36 PM #9
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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.
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Old 11-12-2008, 09:38 PM #10
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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.
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