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[QUOTE=MSJayhawk;4979744]Now, that said, while most lesions are found in the brain and cervical spine, the thoracic spine is no stranger to lesions caused by MS. My thoracic spine lesions affect my sciatic nerve and my left leg all the way to my toes. When I had a VEP in 2002, the VEP indicated that I had problems ongoing which led to a second MRI which included my thoracic spine where they found active lesions. Maybe you can have a VEP too? :angel:[/QUOTE]

MSJayhawk, I have been wondering if I should request a T spine MRI from my MS Specialist (see him on Thursday). I have symptoms from head to toe with lesions on both the brain and C spine. It seems they would want/need to establish if I have T spine lesions to monitor them.

Specifically, at or below the C spine I have the Hug, L'hermittes, numb belly, numb lower back, severe spasticity in my back, numb toes (that feel swollen though they are not), nerve jitters in my legs (knee to toe), and what I can only describe as sciatic spasms that only hung around for about three days...

Also, you refer to VEP. I have had the two MRIs and the CSF with no question of dx...I have MS, but do you think I need that test too? I have done, met my deductible for the year so I suppose now is the time if I need these :rolleyes:

This is something I have been trying to figure out and anything you can offer by way of a suggestion, opinion or recommendation is greatly appreciated :)
Hey Becky,

I wanted to point out that where the lesions are, does NOT control where the symptoms manifest or where the pain is. I have every single one of the problems you mentioned, and not one Lesion in my spine. They are all in my brain.

You do not need further MRIs becaue there is nothing they willl do for you if you do, or dont- have lesions lower. First of all, its highly unlikely that you do, but it wont matter if you do. MRIs are used to determine if you have MS or not....you do, so there is no further reason to keep looking for more.

You also asked about a VEP, again, this test is a diagnostic test. If you already have MS, there is no need to use it. Its normally done when a patient has eye issues and doesnt have a MS dx . A VEP can be done to figure out why a patient has weakness in their arms or legs, but again, you already have a diagnosis and there is no reason to do this test on you.

NOw, if you were to have a bad relapse, they may do some of these tests on you to see "how bad" it is and then repeat them when you are feeling better to see if you recover , or how much you recover.....but also again, they may never do this test on you because with MS its highly likely you WILL have a relapse at some point and it will be obvious when you recover and to what extent you recover. This, is MS.

Dont confuse needing tests with needing a diagnosis. All of these tests are simply diagnostic tests to get to a diagnosis. MS really is a matter of one day at a time. Once diagnosed, there is nothing more anyone can do for you, no additional information which you need to get. Now, I hate to say it, but its a waiting game. You wait and see if you have progression. The fact that you are going on meds is supposed to minimize that risk, but honstly- it takes 6 months before you have any protection against relapses and even then, its what? 26% or something? I dont want to sound like Im scaring you, but even while on drugs, you probably wil have additional symtoms and possibly a relpase. Most of us did....and all of us survived it.

MS is a very individualized disease. For some people, it continually gets worse and there is nothing they can do about it. For 85% of us, we have relapsing / remitting MS and we pray that we are remitting more than we are relapsing! Statistically, most of us are free from relapses MOST of the time, but it only takes one relapse to send us to bed , hating this disease again. No amount of tests or even drugs will prevent this from happening...

I do know that the L'hermittes feeling, is NOT from a lesion in your neck but in your brain.....as is the tingling/ numbness in your limbs. The brain controls thse things, not the spine. SO I wouldnt stress about having additional testing now that you know your diagnosis is defintate. ok?

Nikki
[QUOTE=BeckywithMS;4983738]MSJayhawk, I have been wondering if I should request a T spine MRI from my MS Specialist (see him on Thursday). I have symptoms from head to toe with lesions on both the brain and C spine. It seems they would want/need to establish if I have T spine lesions to monitor them.

Specifically, at or below the C spine I have the Hug, L'hermittes, numb belly, numb lower back, severe spasticity in my back, numb toes (that feel swollen though they are not), nerve jitters in my legs (knee to toe), and what I can only describe as sciatic spasms that only hung around for about three days...

Also, you refer to VEP. I have had the two MRIs and the CSF with no question of dx...I have MS, but do you think I need that test too? I have done, met my deductible for the year so I suppose now is the time if I need these :rolleyes:

This is something I have been trying to figure out and anything you can offer by way of a suggestion, opinion or recommendation is greatly appreciated :)[/QUOTE]

I had a VEP in 2002 because the neuro could not see any active lesions on my MRI. Once she had the results, she ordered the T-spine too which showed active lesions. Since that test, all my MRIs now go from head to T-Spine.

If you already have MS, than it would be a waste of your money to have a diagnostic test which is used to diagnose MS. HOWEVER, if you are applying for SSDI, the VEP is one of the tests which I had to submit when I applied for disability. As such, if this is your case too, then it would not be a waste.

The L'Hermittes originates in your brain and the signal runs downward into your body. My active lesions on my T-Spine were affecting my gait substantially. Not every lesion can be identified to a specific region, but sometimes they can be. However, once the scar tissue has covered the sheath, the long term effects of the scar tissue can be "iffy". That is, our nervous system can rewire, but not always. How the lesion heals can mean the difference between disabling and regaining control. My left leg has been disabled for over 3 years now while my right leg is fine (fine as I define it!).

Let me know if I can help you further. :angel:
Becky,
You are welcome. I will always be honest with everyone here. No sense sugar coating it just to make someone feel better, the reality is we have to deal with the cards we are dealt, but that being said- its not an exact science.

Your doctor saying you have aggressive MS concerns me. First of all, there is no stage of aggressive MS. You were staged at relapsing / remitting MS if I am not mistaken and less than 10% of r/r MSers are disabled. YES, its highly possible you had a terrible onset relapse and all the sudden you are completely out of whack! BUT that doesnt mean it will ever happen again.

I have more than 50 lesions on my brain. I should be unable to do most of what I do and as you know in the past 7 years Ive graduated top of my class with four different degrees and have a high powered job. Lesions, or aggressive MS - mean nothing. This disease will manifest itself however it chooses. Even with all my lesions, I walk, I drive, I think, I write, I travel and I dont let anything stop me. Will you be as able as I am? Maybe.....who says you wont?

Having only had one significant relapse, I truly believe its too soon to tell how aggressive your disease is. AND it can go into remission for the next ten years if it chooses to. You may choose to start the Rebif and fight with all youve got. I was advised to do the same thing and did it...and truthfully, for years I was very happy I did it. It did keep me stable. I would suggest you do something...not nothing. Doing nothing is plain silly. If you have the choice do something positive.

That being said, how you think about this is a HUGE part of how you will react to it. I know you are learning alot daily and I think you are doing a great job of taking in all this knowledge and figuring out what to do with it....but do NOT let one doctor tell you that anything is going to happen to you which hasnt already. They have no way of knowing this. If you continue to get worse, and symtoms pop up which are new, and they change your label to progressive MS, then maybe you do have to reconsider what you will do as far as disability, but I dont believe that disability should be a first line of defense....and a good lawyer can push it through in many cases rather quickly and unless your family is completely dependent on you having this, if I were you, I may hold off a few months to see how things play out. There is just as good a chance that youl feel 100x better than youll feel worse, right?

Always look at the half full glass.

Hugs,
Nikki





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