Updated my blog

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Loobie » Sat Dec 19, 2009 11:59 am

Short update this morning
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Postby LR1234 » Sat Dec 19, 2009 1:08 pm

Thanks for the update Lew. I hope your extra spasicity is down to the LDN. I hope that everything settles down soon and you start to see more improvements again.
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Postby ozarkcanoer » Sat Dec 19, 2009 1:38 pm

Lew, I know how cold and dreary Ohio can be since I grew up in a small town about 60 miles north of Dayton. We lived by a lake called Indian Lake and it froze so hard that you could drive an automobile over the ice and do twirlies, LOL.
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Postby skydog » Sat Dec 19, 2009 3:19 pm

Leave it to you Lew to label yourself a " histrionic ass " I was looking for a term that fit you when speaking with our good Dr. All good old Buddie. Your quite a guy and glad to be your friend. Flat even with no further progression is good. The LDN is quite likely the root cause of your spasticity. I am staying drug and supplement free for now, but have thought about the LDN for the future. When I am just shy of shivering is when I move best. My loose wired circuits make better connections when cold. I seem to be a little better in the heat these days at least I can take a hot shower and not feel the crushing heat feeling as bad as prior surgery # 2. We will get there from here. Sometimes I feel like an old buzzard waiting for a meal, Patients my ass I want it now... Cheers from the NW, Mark Also posted this on your blog without spell check. Oops! Oh well what can I say? I grew up a outdoorsy guy with little interest in academics. M
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Postby Loobie » Sat Dec 19, 2009 3:32 pm

ozarkcanoer wrote:Lew, I know how cold and dreary Ohio can be since I grew up in a small town about 60 miles north of Dayton. We lived by a lake called Indian Lake and it froze so hard that you could drive an automobile over the ice and do twirlies, LOL.


I graduated from Troy, so I'm real familiar with Indian Lake. Lots of friends have second homes up there. If you can believe it, that 3 foot deep lake is a big time hot spot and people are/were putting up big homes all around that lake!
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Postby Sharon » Sat Dec 19, 2009 5:33 pm

Lew -

You are spot on with the LDN and the spasticity. Lower the dosage for awhile.

Hey, your update on the blog is pretty darn fantastic. You have not gotten worse -- a few months ago all our posts were about no more progression. So far so good - right? My improvements are very subtle -- I may not notice anything for a couple of weeks and then ---woa! -- there it is!!.

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Postby questor » Sat Dec 19, 2009 8:39 pm

Sharon wrote:Lew -
You are spot on with the LDN and the spasticity. Lower the dosage for awhile.

Lew, Sharon,
I've tried twice in the last two months to restart LDN after the stent procedure on 9/16, first at 4.5mg nightly, then at 3.0mg.

I had used LDN for almost a year before stopping it a few weeks in advance of the stent procedure in September.

Both times on trying to restart, after one night, there was an immediate increase in lower leg spasticity and a return of bladder leakage problems. I had been enjoying the great reduction in these symptoms that started the day the stents were installed.

I miss the stamina assist that LDN used to give me, but I'm unwilling at this point to wait out the initial increase in spasticity that comes with restarting LDN (assuming it does eventually die down again with time). During the year I used LDN I was living with the nightly spasticity and the bladder leakage problem, without realizing that LDN might be contributing to it.

I think the stents are helping improve my stamina in place of the LDN, so I'm making the choice to live without for now.

Good luck, Lew, I'll be watching for your updates. If it works for you, I may bite the bullet and try sitting out the spasticity as well.

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user
Botox Bladder Injections
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