CIS and spinal tap and fatigue

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CIS and spinal tap and fatigue

Postby booker » Tue Jan 08, 2008 7:58 am

Early last year I had 2 events about 1 month apart, each followed by new MS type symptoms. MRIs following each event showed a new lesion in the brain. Almost a year out, the MRIs show no new activity and I haven't experienced new symptoms. A stong course of steroids knocked out most symptoms about half a year ago, though I've had lingering fatigue, which has at times been significant.
2 questions:
1)CIS and testing
It seems that I fit into the group called Clinical Isolated Syndrome, having had 2 demylinating events - not enough activity for a definitive diagnosis. My neurologist seems to have a very wait and see opinion and appears very skeptical that my case will develop further. The majority of the reason seems to be on my age, early 40's. I've asked for further testing that may give some more indication, particularly since I have MS in the family, but the neuro says that she would not find these tests useful.

I'm wondering if I should get another opinion. Why not run a spinal tap? I'm in a big city and the neuro is fairly prominent and an MS specialist at a big hospital. My relatives neuro (in a different city) says that he would do the spinal tap.

2)CIS and symptoms
Is it common to have a CIS status and persistent symptoms? Again, following steroids, my symptoms are fatigue.
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Postby cheerleader » Tue Jan 08, 2008 3:08 pm

Hi Booker-

So sorry you find yourself here...but this is a good place to ask questions-
I am quick to say that we are not doctors on this site (w/an exception or 2), and any advice I give should not be construed as professional. However, if you do not feel comfortable with your doc's protocol, I'd look for a 2nd opinion. This is your body. If I were you, I'd want more definitive answers as to what is causing the plaques in your brain. MS? Lyme? Low B12?

Most doctors do not take a "wait and see" position anymore, since early intervention can mean a slowing of the MS progression. My husband was DX w/ MS in 3/07, after an MRI showed many plaques in his brain and spine. Even though it was his first attack and he is 44, his doc immediately had a lumbar puncture done to rule out other diseases. He was positive for MS. He started on Copaxone the next week, and has been doing well (no relapse or progression) now 9 months later.

If you are able to get another opinion, I would do it-
Best of luck to you, and wishes for better health in '08
AC
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Postby jimmylegs » Tue Jan 08, 2008 3:23 pm

i'm pretty sure that low b12 is associated with spinal not cranial lesions. specifically, cervical and lumbar/dorsal lesions.
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Postby booker » Tue Jan 08, 2008 6:22 pm

Cheerleader, Thanks very much. Very sorry about your husband. Seems he's lucky to have you. In addition to my age, I think my neuro leans heavily on the fact that there are only two lesions. She's quite active in research and has authored a number of papers which advocate early interventions, so a wait and see approach is not a general predilection. I'm not into rushing into early meds, since they onerous, if it may not be necessary. But, I'm still unclear as to why she feels additional tests, as a spinal tap, won't yeild additional information for her, when other doctors find them useful. I think that I've been looking for others, like you, to say that it does make sense to seek another opinion if I'm not comfortable. So, I guess I will.
thanks again.
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Postby cheerleader » Tue Jan 08, 2008 6:54 pm

Jimmy-
yeah, you're right on the B12...my bad. Just trying to remember the other diseases the doc was eliminating with my husband's LP

Booker-
Lumbar punctures are a real pain (literally) and your doc may feel very comfortable making her diagnosis without one, and sparing you the discomfort. It's a pretty invasive proceedure. But you're right...it's up to you.

In the mean time, en lieu of pharmaceuticals.... some supplements to look into for brain health-
CoQ10
omega 3/DHA/flaxseed oil
alpha lipoic acid
vit. B12, D and E
the list goes on.

Thanks...My husband's lucky, but he's not alone. Alot of terrific caregivers on this site consider MS "their disease." Takes a team to help our loved ones face this nasty disease. Really hope you don't have it-
best,
the aging cheerleader
PS re: fatigue. It's the worst symptom my husband has. Was quite debilitating until he started Provigil last month. Been a life-saver.
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Postby jimmylegs » Tue Jan 08, 2008 8:42 pm

no bad at all. just wanted to clarify.
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