Notes from CureIous' at Stanford

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

Postby Jamie » Wed Sep 02, 2009 9:47 pm

Mel went through a phase of fatigue about now when her coumadin was upped.

it levels out.
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Postby Loobie » Thu Sep 03, 2009 4:52 am

Me too. The best days I've had so far was when my blood was too thin and I didn't take any for a couple of days. Then went back on it and have some issues again. I can't wait to be off that shite.
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Postby CureIous » Thu Sep 03, 2009 4:05 pm

Thanks guys! Like anything else, just ride it out, wont last forever. Thanks for the update Lew! Really well written.

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby CureIous » Wed Sep 09, 2009 10:03 pm

Well after just 5 days of my "upped" coumadin, (10 mg one day 12.5 the next), my INR went from 2.2 to 3.3 and PT jumped to over 30. Wow no wonder I felt like crap the past 5 days lol. Amazing how those tiny little pills can do so much so fast. Anyways my GP put me back down to 10mg/day and 1 day of 12.5.

I swear when I'm off that stuff the Energizer bunny will get worn out trying to catch me.

Back to Cheer's notes!

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Neuro visit

Postby CureIous » Mon Sep 21, 2009 6:49 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:38 pm, edited 1 time in total.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby mrhodes40 » Mon Sep 21, 2009 7:05 pm

Mark great job!! Yeah for you!
I am so glad you were able to do this and get a positive partly open mind
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby CureIous » Mon Sep 21, 2009 8:37 pm

mrhodes40 wrote:Mark great job!! Yeah for you!
I am so glad you were able to do this and get a positive partly open mind


Yeah I was kind of shocked, because I met the PA before the procedure an was kind of disappointed to not fill him (the neuro) in on anything, and here I come to do the follow up and it was him. I was thinking "oh gosh start from square 1 here we go" and do it fast cause he's an in-and-out kind of doc, but surprise to me that he had in fact done quite a lot of research himself already, just from the older Zamboni paper. Oh I plugged Cheer, had her notes and everything, but could tell he was an "official sources" kind of guy lol. Ohhhhhkayyyyy. I could tell however that he didn't quite "get it" as far as the "how does some jugular restriction cause MS". Hey you got more time lets sit down, can't explain all of this in a 10 minute visit. Sheesh! I'm smart but not THAT smart lol.

Btw had a very nice chit chat with the assistant on the way out, hope she gets here to investigate sometime. She deals the most with the complaints and of course the numero uno out here would be the heat stress stuff. I'm like, "what heat stress?".

She is very proud of me for going this far with everything, which of course made me blush.

Good times.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby CureIous » Wed Sep 23, 2009 4:17 pm

Instead of making an entire new thread, wanted to mention my follow up is scheduled for Monday Oct 12. I am traveling alone which is going to be super boring. Saving up my celphone minutes, so if I call ya, it's cause I already went through my entire address book lol. 8 hours on the road is no big deal but doing it alone, well last time I got pulled over doing 105 mph lol. Yes mister nice CHP guy, was just trying to get home, that's all! My kids, did I show you my kids?! Aren't they cute?? They miss daddy! Oh, just a warning? Why thank you very much mister nice CHP officer guy! lol. Yes, I was a VERY good boy the rest of the way.

On a lighter note, in the Patient Self Education department: My INR hit 3.4 from my Tuesday test, and was only 1.9 last week. The only dosage change was two doses of 12.5 mg spaced 3 days apart to kick it up a notch.

However, unbeknownst to me (or apparently anyone else), tetracyclic type antibiotics such as doxycycline enhance the effects of guess what? Coumadin! Ding ding. Good old internet. I just happen to be on my 4th day of exactly the same thing.
Anyways no worries and because the INR's tend to yo-yo and it is easy to yo-yo the medication along with that, am going to instead maintain the dosage at present levels and re-test for a 2nd time this week, then adjust on Friday if need be. Keeping the docs in the loop of course.


Hard to believe some folks have been on the coumadin for 25 years! By the time we get it down to a nice hum we are off of them anyways so just do what you have to do to get through it and the end of the tunnel is not far down the road....

:) Mark. (enjoying the 102 degree heat in relative comfort...)
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby LR1234 » Wed Sep 23, 2009 4:27 pm

I mentioned on the abx thread that I thought Doxy might have a blood thinning effect (something to do with the bacteria which produce Vitamin K being killed off or something)
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Postby CureIous » Wed Sep 23, 2009 5:32 pm

LR1234 wrote:I mentioned on the abx thread that I thought Doxy might have a blood thinning effect (something to do with the bacteria which produce Vitamin K being killed off or something)


Thanks LR, I had just come off a course of Keflex and transitioned to the Doxy, had done my homework on the Keflex but not on the Doxy. (Spanks own hand). I'm surprised that the GP who is monitoring my INR and prescribed the Doxy didn't know about the interaction. I say "interaction" but it's really more of like you said, the Doxy does stuff to the body which in turn makes the Coumadin work better. So you need less, so at present dose your INR pops up.

Btw the Doxy in the first place was for this rash. Now I know rashes can possibly be related to the coumadin, but, unfortunately for me, it also coincided with moi working on my nasty junipers out front. The last time I did the nasty junipers out front I got exactly the same rash, so apparently am allergic to either the juniper or the copious wasp offal that impregnates said shrubs. If I hadn't done the shrubs then it would be slam dunk.

Anyways, the "rash" looks like hives not bruises, they are distinct circular patches and appear to worsen as my INR goes up btw. Here is what I think happened, A. work the shrubs, in the heat=sweaty open pores, covered with the dust and junk off the shrubs=allergic reaction, which only happened once before, which responded very well to Doxy, this time however, I delayed getting the Doxy, thinking it would go away. Enter in the coumadin, which exacerbated the situation. I'm halfway thru my course of Doxy with little improvement but the little patches seem redder as my INR goes up. They don't itch at all, creams do nothing, so if the Doxy doesn't work I'll just leave em be til off the coumadin. No big whoop just scary to look at, at first glance. I've never had skin issues before besides the one isolated case last year so not worried about it at all. Perhaps some benadryl and see what happens? I don't think benadryl is contraindicated for coumadin right?

Thanks for your thoughts.

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby mrhodes40 » Wed Sep 23, 2009 6:58 pm

oh what a tangled web we weave when COUMADIN we decide to recieve............. :lol:

the dang stuff interacts with FOOD. I mean really!!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby CureIous » Wed Sep 23, 2009 7:24 pm

mrhodes40 wrote:oh what a tangled web we weave when COUMADIN we decide to recieve............. :lol:

the dang stuff interacts with FOOD. I mean really!!


Yes, I recommend all newbies stop eating, drinking, and breathing whilst on coumadin (chomp! sorry, eating thru my burger). Also don't take anything and also don't think anything.

Other than that, continue on!
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby whyRwehere » Thu Sep 24, 2009 1:17 am

I will have to discuss this with my mother, who is on Coumadin. She seems to have endless rashes from this or that (currently poison ivy, ugh- I told her to have a shower as soon as she went inside after gardening, but it was too late...) Obviously, the coumadin helps anything that wants to irritate your skin, do a better job. And I think Juniper and those other trees, leylandii, can cause a rash on most people.
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Postby magoo » Thu Sep 24, 2009 7:41 am

Mark,
I hope the rash is better. How soon before going to see Dr. Dake did you start the Coumadin? Will you be able to stop if all looks well in October?
I saw my GP yesterday and thought I'd mention CCSVI since he may have to monitor me "when" I go to Stanford. Well, his first reaction was pure skepticsm and doubt. He started rambling about risks and strokes, blah, blah, blah! I remembered what Cheer said about not reacting defensively and I just sat back and offered some reading material. By the time I left he was kinda excited and said he was headed to a meeting and was planning on sharing the info. He also said he was going to talk with my cardiologist (I have low blood pressure) and get his thoughts too.
Reading about your cautious neuro made me feel more comfortable with my own neuro's reaction. I am choosing to keep him in the loop, and maybe change his perspective. Maybe my GP will have a more open mind too? You never know!
I'm so glad you continue to feel good :)
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby CureIous » Thu Sep 24, 2009 2:08 pm

magoo wrote:Mark,
I hope the rash is better. How soon before going to see Dr. Dake did you start the Coumadin? Will you be able to stop if all looks well in October?
I saw my GP yesterday and thought I'd mention CCSVI since he may have to monitor me "when" I go to Stanford. Well, his first reaction was pure skepticsm and doubt. He started rambling about risks and strokes, blah, blah, blah! I remembered what Cheer said about not reacting defensively and I just sat back and offered some reading material. By the time I left he was kinda excited and said he was headed to a meeting and was planning on sharing the info. He also said he was going to talk with my cardiologist (I have low blood pressure) and get his thoughts too.
Reading about your cautious neuro made me feel more comfortable with my own neuro's reaction. I am choosing to keep him in the loop, and maybe change his perspective. Maybe my GP will have a more open mind too? You never know!
I'm so glad you continue to feel good :)


Thanks Rhonda! Just a reminder it was Rhonda who led me here! You did well with your docs, the evidence will speak for itself, it's a matter of getting them to look at it in the first place. I prefer the peer pressure approach, "well everyone ELSE is on the bandwagon, did you miss it perchance?" lol. JUST KIDDING.

It IS exciting because most doc visits are pretty straightforward, and you garden variety GP who treats people inserts drug A into problem B for result C or tells people to exercise more and stop smoking. Sad but true. Few get a chance like this to participate in a ground breaking study on a chronic disease course, that actually DOES something they can see without looking under a microscope. I'm excited that they are excited!

My feeling is they don't deviate from the standard of care, like my neuro, but behind closed doors they are very excited, and curious. Curious is a good thing!

EDIT: to answer the q's about coumadin, the coumadin starts post-op. The standard is to 5mg at first then 10mg then test and see. Takes awhile for the body to regulate and get to an even keel. Most people will yo yo up and down, this is to be expected. My suggestion to him was to retest today, which I did, then see what is what on Friday. Readings will fluctuate on a daily basis until it gets to that nice idle speed so my suggestion to him was maintain present course, retest today, then see what the average looks like. Reason being, since the antibiotic, specifically THAT antibiotic, elevates the INR readings, and said antibiotic will be finished off Sunday, to make an adjustment now, then stop the antibiotic on Sunday, will result in even more yo-yo effect next week when I get tested. So today from my POV, just making sure it's not going through the roof into the high 3's or 4's. If it is then definitely would want a short term adjustment for safety. I'm more worried about being killed in a car crash going to get groceries than this, but caution is warranted in any case. Especially when age factors in, and I mean those that are closer to senior age need to be MORE careful in their monitoring. Remember, there are people that have been on coumadin for 20-25 YEARS. :)
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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