Where do you begin?

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Where do you begin?

Postby craftiegal » Tue Jan 20, 2009 2:09 am

Please bear with me.....this is kind of long......First THANK YOU for this excellent source of information!

After 3 months of dizziness, stumbling (like I'm intoxicated) headaches (unlike my typical migraines) and just not feeling right....I finally seen a Neurologist! I was so excited. I can't stand feeling this way. It feels like the neuron's aren't firing, I loose thought, can't articulate words, & stutter. It's so frustrating.

After a thorough exam & reviewing my history; we agreed to blood tests; an Evoked Potential Test & Spinal Tap in the next two weeks.

I show deficits on my right side. The MRI shows multiple lesions, including the brain stem. MS was suggested as a diagnosis; however, wants to rule out other diseases.

As I research other symptoms I've had in the past 4 years, they fit into the MS. In particular blurred vision & muscle spasm.

I'm trying to gain as much information as I can. I have a few questions.....

How do you know what medication to start on? Is it based on symptom control or to slow lesion progression? The side effects alone of these meds are enough to make someone run the other way!

Is there one central post or list about vitamins/minerals/herbs for treatment of MS?

Are the vitamins enough to help or are they used in combination with the medications for relief?

I am so grateful for this site. It has offered so much information!

Candi
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Postby daverestonvirginia » Tue Jan 20, 2009 7:04 am

I thought if the MRI shows multiple lesions, it was pretty much a done deal, but you need a good Neurologist you can depend on so I would work with them until and if the final diagnosis is MS.

How do you know what medication to start on? For me, my Neurologist gave me some information on the different treatments for me to look over, I did some research on my own, we got back together and talked it over.

Is medication based on symptom control or to slow lesion progression? You could end up with medication for both if you need it. So, you could be put on some meds to control symptoms and other meds to slow the progression of MS.

The side effects alone of these meds are enough to make someone run the other way! That is one of the reason why you should to take some time and look at you options. Some meds have very little to no side effects. You have some time, you do not need rush, and you can always change you mind, if a particular med does not work out for you. I am on Copaxone.

Is there one central post or list about vitamins/minerals/herbs for treatment of MS? I would say no, but this site is a great resource. I also am on the Best Bet Diet, and there is a list of vitamins and supplements which goes with it listed on the MS-Direct web page.

Are the vitamins enough to help or are they used in combination with the medications for relief? This is me talking, you will need to decide these things for yourself, but I decided early on to try and do everything I could, so I take the meds and vitamin/supplements and diet path.

Hope this helps.
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Postby patientx » Tue Jan 20, 2009 8:04 am

Dave's answers were pretty much right on.

I will add some things (and much of this is based on my understanding). When a brain MRI shows areas of signal hyperintensity (or "spots," for short), these could have any number of causes. In MS, these are usually due to de-myelination, but there is no foolproof way to say this is what is happening without pulling the brain out and looking at the nerve fibers. However, with MS, the spots usually show up in characteristic places. The non-specificity of the MRI is why your neuro wants to schedule other tests.

When you talk about medications, you have to be a little careful. There are medications that help with symptoms, like Neurontin for nerve pain. I assume you mean the DMDs, of which Rebif, Avonex, Betaseron and Copaxone are the main choices. These aren't really meant to provide relief of current symptoms, but to prevent future relapses. They also slow the progression of the disease, but which ones do this best and to what extent is a matter of much debate. When I was diagnosed, the neuro told to pick one of the 4. I guess I was supposed to base this on what side effects I could tolerate and how often I wanted to inject.

A vitamin routine and diet may well be enough to help slow the disease. No clinical trials have been done to prove this, and success of this method is based on personal accounts. When I was confronted with the choice of starting meds, I reasoned that I would do everything I could to slow the progression, even if it meant sticking myself with a needle everyday. But I also modified my diet and I take a bunch of supplements.

For some ideas on vitamins and other supplements, you can search through old posts in the Regimens or Natural Approach sections. You can also post this question in a separate thread, and you will get some good answers.
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Postby msmything » Tue Jan 20, 2009 8:14 pm

Welcome craftie, you'll find lots of info here.
As far as the disease Modifying Therapies, interferons and glatiramir acetate, have very long tlks with your doc, make hime back up his choice, if he has one for you. If he doesn't have a choice, I consider another doctor.
As far as I understand, the strenght of the interferons, go from Avonex ix wk, as the weakest, to betaseron, everyother day, and rebif, the strongest, 3 x wk.
Copaxone is a different drug entirely (glatiramire acetate) it's a daily injection.
Those are the main choices.
if they've been able to catch you fairly early on one or another of these are recommended to slow progression and reduce the number of flares.
Read Read Read, hang out in the library and Barnes and Noble. Ms for dummies is even a good resource.
For me this is all about knowledge and attitude!
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Postby craftiegal » Wed Jan 21, 2009 8:16 pm

Thank you all SO MUCH!

I want to return to my next appt., with as much knowledge as possible! This is definitely confusing to me, especially when the brain isn't functioning at a great rate anyway.

I just think learning as much as I can about MS-meds-treatments, etc., is the best I can do for myself!

This site is awesome - thanks for your time in responding to my post!
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Re: Where do you begin

Postby NHE » Thu Jan 22, 2009 2:32 am

Hi Craftiegal,
Welcome to This Is MS. I believe that you will find a helpful community here.
After 3 months of dizziness, stumbling (like I'm intoxicated) headaches (unlike my typical migraines) and just not feeling right....I finally seen a Neurologist! I was so excited. I can't stand feeling this way. It feels like the neuron's aren't firing, I loose thought, can't articulate words, & stutter. It's so frustrating.

After a thorough exam & reviewing my history; we agreed to blood tests; an Evoked Potential Test & Spinal Tap in the next two weeks.

I show deficits on my right side. The MRI shows multiple lesions, including the brain stem. MS was suggested as a diagnosis; however, wants to rule out other diseases.

That's good. Some doctors are too quick to diagnose MS. It's better that your doctor is willing to be thorough and do the additional tests. There are several diseases which can mimic MS but which are treatable. By the way, with regards to the spinal tap, you may wish to read through this post which discusses the procedure.
I'm trying to gain as much information as I can. I have a few questions.....

How do you know what medication to start on? Is it based on symptom control or to slow lesion progression? The side effects alone of these meds are enough to make someone run the other way!

This question comes up on the forums quite a bit as you can imagine. I have written some posts in the past which address it and I think that you'll find them helpful.

Here are the links...
Is there one central post or list about vitamins/minerals/herbs for treatment of MS?

I don't believe that there is a "central post" that discusses vitamins, minerals, and supplements. However, you will likely want to read through the Natural Approach forum which discusses many supplements which are of interest to people with MS.
Are the vitamins enough to help or are they used in combination with the medications for relief?

I believe that supplements and diet are complementary to the medication. While I can't recommend specific supplements for any one person, for myself, I've derived a regimen based upon several published journal articles available on PubMed. These include: Omega-3 fish oil, Natural Vitamin E, Vitamin B Complex, a combined Magnesium, Calcium, Zinc, & Vitamin D3 supplement, R-Lipoic Acid, Turmeric, Ground flax seed, and Green tea. I have also eliminated trans fat from my diet and try to get some exercise when my energy level is up to it.
I am so grateful for this site. It has offered so much information!

I hope that you continue to find it helpful. If you haven't already, you may want to have a look at the Forums FAQ thread.

NHE
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Postby craftiegal » Thu Jan 22, 2009 3:07 am

Thanks NHE for the links -- Especially the LP!
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Postby jimmylegs » Thu Jan 22, 2009 5:46 am

good call on reviving the spinal tap issue NHE i missed that.

cg here is the original article which brought this to my attention

http://www.geocities.com/HotSprings/Vil ... index.html

Image

there is a video link on that site too
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Postby jimmylegs » Thu Jan 22, 2009 5:50 am

the idea is that you can see that, when the needle enters the cord:
A bevel orientation makes a swinging saloon door hole that flaps in the breeze of fluid pressure inside the cord,
orientation B makes a slit that pushes open when pressure inside is applied, and
orientation C makes a slit that is self-sealing when interior cord pressure is applied. lower chance of leaks, heals faster, no pressure drops in the CSF...
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Re: Spinal tap needle bevel orientation

Postby NHE » Thu Jan 22, 2009 4:26 pm

Jimmyleggs,
I'm confused. I thought the issue addressed by the two papers was whether or not the needle bevel was oriented perpendicular to the dura fibers or parallel to them. If the needle bevel is perpendicular to the fibers, then the fibers tend to be cut. However, if the needle bevel is parallel to the fibers, then it there is less cutting and the fibers tend to be pushed aside by the needle instead of cut.

Bevel direction and postdural puncture headache: a meta-analysis.
Neurologist. 2006 Jul;12(4):224-8.

Needle bevel direction and headache after inadvertent dural puncture.
Anesthesiology. 1989 May;70(5):729-31.

The diagram you have posted shows the needle bevel oriented perpendicular to the fibers in all three cases.

Thanks, NHE
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Postby jimmylegs » Thu Jan 22, 2009 6:16 pm

NHE, i re-read those abstracts and in one study the dura is accidentally punctured during epidural analgesia, and in the other it is intentionally punctured as part of a lumbar puncture diagnostic test. in both cases angling the needle parallel to the dural fibres mitigated against pressure loss and the associated headache, whether the cut was intentional or accidental.
as to the studies and the image, i agree with you that there are 90 degree cut-sides involved in images A and B, but i don't see a 90 degree cut made by either side of the needle bevel in image C. it looks to me as if the cut flap will nest nicely into the main tissue of the dura when any pressure from inside the cord is experienced.
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Re: Spinal tap needle bevel orientation

Postby NHE » Thu Jan 22, 2009 8:54 pm

I picture it like this. I imagine that the dura fibers run longitudinally parallel to each other like long spaghetti noodles. Next, I imagine that the needle bevel is analogous to a small hand shovel, like the kind used by gardeners (a wood splitting wedge also makes a good mental model). If I held it such that the blade was perpendicular to the noodles and tried to force it through the noodles then many of them would be cut. However, if I rotated it 90° such that the blade was parallel with the noodles, then less of them would be cut when I forced it through the noodles. My interpretation of the abstracts is that they're talking about this type of change in bevel orientation. In effect, rotating it 90° so that it's less likely to cut the dura fibers. In contrast, the diagram you posted shows that the needle has been rotated 180° and the angle has been changed. The needle bevel is still oriented in a way that would cut the fibers. However, due to the combination of the angle and rotation in diagram C, the cut formed is of a configuration that would be much more likely to seal when internal fluid pressure is applied. However, it is still not parallel with the dura fibers. In addition, I also wonder how much angle can actually be applied to the needle? Isn't it inserted between two vertebrate? Is there that much space available such that a nearly 30° angle can be applied?

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Postby jimmylegs » Fri Jan 23, 2009 6:56 am

ah, i gotcha. sounds like there are a couple of different approaches, midline and lateral, and a difference between bevel plane flat on the skin, or bevel plane perpendicular to the skin.

i tend to think, personally, that a slightly larger but self-healing cut is better than a smaller leaky cut. maybe if you're really careful you can get a smaller, self-healing cut??

there's the whole other debate too, about whether to use atraumic needles or the bevelled cutting type to prevent post dural puncture headache.

"Bevel Orientation
Another factor that significantly reduces likelihood of PDPH when using a cutting beveled Quincke needle is the orientation of the needle tip to the dura. Although the dural fibers in general have no consistent orientation, branching elastic fibers do tend to lie in an orientation that minimizes the size of the opening when the cutting bevel of the needle is inserted parallel to the long axis of the spine.[3,4] This causes fewer fibers to be cut than if the bevel were inserted in a perpendicular orientation. Thus, a smaller hole in the dura is created, less CSF leakage occurs, and there is reduced likelihood of PDPH.[43,52,55,69,70,71] Therefore, insertion of the needle with the cutting bevel parallel to the long axis of the spine is indicated. Tearing of the dura may also occur upon removal of the needle if it is rotated to a perpendicular orientation after insertion.[72] Bevel orientation is not an issue with atraumatic needles, as they tend to separate dura fibers rather than cutting them, allowing them to return to their original position with decreased CSF leakage.[61]"

there's yet another dynamic about the costs involved with using atraumatic needles (expensive) vs bevelled cutting needles (cheap)

dr hatfalvi who generated the layman's image describes orienting the bevel with the skin. here's a link to video:
http://www.go-aps.com/spinal/hatfalvi.mpg

the following quote indicates the bevel plane oriented perpendicular to the surface of the skin.
"Post LP headache is reduced by 50% or greater when the bevel is parallel to the dural fibres' long axis. To you and me this means that if the patient is lying in the lateral decubitus position, the flat portion of the bevel should point up towards the ceiling."
Image

and yes the needle is inserted between 2 vertebrae. there's this much room:
Image
Image
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