Mr. Impatient

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

Postby peekaboo » Mon Jul 20, 2009 2:41 pm

My rx for Plavix is one a day..my warfarin has chaned to 75 for all days but 2. after my last test reached 2.1.
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Postby Daisyduck » Mon Jul 20, 2009 2:42 pm

I have my own experience with "the legs" after surgery which was mid-June. so it's been about a month ago.
I have had ms 30 years and was still sorta walking while pushing off walls in the house for balance and using a cane outside.
Dr. Dake told me up front that my ability to walk may not get as great a benefit as I want, but that many other problems I experienced would benefit.
So strictly about the walking, I was doing better right after surgery and up to about a week ago, and I am not sure why. But once before in 2004, I had an invasive surgery with aenesthetics, and thereafter I also felt "better" walking and with other symptoms for about one month after. My husband and I explained that away, sort of, by reasoning that the immune system stands up tall (or as tall as possible in our case) against invasion from the outside, and becaus of that my symptomatology was reduced.
However, it has been 97 degrees with humidity in San Diego County where I live, and because tonight I have a big meeting I am running the air conditioning now (we have solar panels!!) which is unusual for me, in an attempt not to wear out so. Now Dr. Dake thinks that I may retain the little increase in ambulation I had gained and encourages me to continue to exercise and eait for temperatures to come down.
But good luck to you all. I have learned a lot from everyone and wish you all so well. Daisyduck
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Postby mrhodes40 » Mon Jul 20, 2009 2:57 pm

I have a possible theory about the walking in the immediate aftermath of surgery, I wonder if the anesthetics, which tend to stay in the fat for a little bit, soften spasticity so that walking is not so "stiff" in the early post surgical phase and a person feels looser? I had a hysterectomy and felt pretty good walking wise in the first week so I know what you refer to there daisy. This is pure speculation.

i am on 2 plavix btw
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
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Postby Loobie » Mon Jul 20, 2009 4:06 pm

My pain was markedly better today; some of it creeping back in but I've been cleaning :D , but some of my leg stiffness is back. I'll have to exercise it out I guess. This IT band syndrome that I suffer from has reared it's ugly head again. I think with my newfound employment, I'll get a gym membership and do some stationary bike work. Running just irritates the poop out of ITBS. Don't worry, I'm not going to try to run until the warf is done, if then. That may be a fond memory even if my progression is stopped. But I do still have my bike and helmet. Typing is better today, turning and all of it. After the initial drug reactions and stuff I've come to the conclusion that I'm a big baby when it comes to pain. I'm not even a week out and my pain is very tolerable. Some of the stories you guys have written on here about weeks and weeks make me feel I probably would have went stir crazy. I guess that's why we don't have the babies!! :lol: . Seriously, all this pontificating and theorizing about all this stuff makes me so much more self aware, like when I was in the tovaxin trial, and I'll have to tell you, I don't like it much. I need to quit noticing every single little thing and making a mental note of it, but I don't know how to stop!

Someone give me a cyber slap like in "Moonstruck" and say "Snap out of it!". I'm serious, I don't get grumpy and all that or take it out on my family, but I just don't deal with the physical part of this well at all. I'm talking my disease and everything. I feel I work on the mental and spiritual aspect of it pretty well, but the physical, not so much.

I thank you all for listening to me bitch and moan about 6 days of pretty good pain when poor Marie is out there dealing with this recovery for a month with her stomach and stuff. Geesh, I look so much tougher than that :lol: .
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Postby Jamie » Mon Jul 20, 2009 4:56 pm

Lew, rest assured 90% of all men are the same.

I'd still be on the percs even if I had a twinge. I'm a wimp.

This'll cheer you up - Mel just got off the treadmill, 30 mins of walking, nothing to a girl who used to run marathons but still a big achievement.

making dinner now.

we were talking before and she said that after HiCy she felt better and the relapses stopped but she was still very much aware she had MS, fatigue, blurriness when hot etc.

She said she wasn't going to tell me this but she was telling her doctor friend that the last two days she hasn't felt that she's 'got' MS at all.

She's remaining cautiously optimistic, I'm giddy of course.

Results May Vary. Professional Driver Closed Course. Enjoy Responsibly.

But at least all the vibes and tales are positive.
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Postby Sharon » Mon Jul 20, 2009 6:14 pm

Lew -
This IT band syndrome that I suffer from has reared it's ugly head again.


I just got back from Pilates and guess what we were doing? ---IT band release. So, get yourself a hard foam roller about 5 inches in diameter - 36" long. Lay on one side of your hip - roll back and forth across the IT bands...OUCH :!: The rolling is breaking up the little air bubbles in the fascia of the outside of your leg...it helps with the hip and upper leg stiffness.
http://www.nefitco.com/foam_rollers.html?source="google"&gclid=CNfpoPvO5ZsCFRPyDAodBwxQ6A

OR

maybe you can self-massage with a rolling pin
http://www.pedigest.com/downloads/IT_Band_massage.pdf

Take it easy
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Postby chrishasms » Mon Jul 20, 2009 6:16 pm

123
Last edited by chrishasms on Sun Dec 06, 2009 12:02 pm, edited 1 time in total.
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Postby mrhodes40 » Mon Jul 20, 2009 6:39 pm

we were talking before and she said that after HiCy she felt better and the relapses stopped but she was still very much aware she had MS, fatigue, blurriness when hot etc.

She said she wasn't going to tell me this but she was telling her doctor friend that the last two days she hasn't felt that she's 'got' MS at all.



I wondered how that was feeling to her. Interesting. Thanks for sharing this!!! WHAT FUN FOR YOU GUYS!!
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 skydog » Mon Jul 20, 2009 8:20 pm

The first few days for me were great then I felt what seemed to be increased weakness in my legs too. What I did notice almost right out of the gate was that the overall fatigue was far less. So what is working for me is exercise until the going gets tough then rest however long it takes to get up and go again. This is my program daily since surgery. The first two weeks were the worst and now the third week I am definitely noticing my endurance returning. Even with the increased endurance my drop foot is the same but spasticity in the left leg is less. Just gets better every day. Lots of physical therapy and maybe a massage from my wife. Not sure about rolling pin therapy, sounds scary. Hopefully some lost connections will re wire around the damaged nerves. Keep pushing on Lew. Mark
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Postby mrhodes40 » Tue Jul 21, 2009 8:11 am

sure about rolling pin therapy, sounds scary


While we are on coumadin it is good to take a lighter view of deep massage type work. I bruise if you look at me too hard !! 8O
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 skydog » Tue Jul 21, 2009 1:02 pm

Not quite to the bruising stage stage yet. Had to up the dosage since my level is about high normal with one warferin pill daily so we will see what 1.5 / day brings. Going a little lighter on the dark greens and see if that will help to bring it up a notch or two. Lite message sounds good, No rolling pins for me yet. Cheers, Mark
Plant a BIG Garden Live in the Moment
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Postby Sharon » Wed Jul 22, 2009 5:53 pm

While we are on coumadin it is good to take a lighter view of deep massage type work. I bruise if you look at me too hard


Yes, Marie I agree with you. Surprisingly though when I was rolling my IT bands in Pilates I did not bruise.
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Postby Loobie » Thu Jul 23, 2009 6:31 am

I need to try the stuff in the link you posted Sharon. It actually keeps me from walking further than my strength would allow. I suppose that's a good thing in a wierd way!
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Postby Loobie » Thu Jul 23, 2009 6:32 am

Oops, hit submit too early. My INR was really high. Dake took me off the coumadin anyway due to the rash, but my number was 3.2, so my hope is that the Plavix and baby aspirin keep me thin enough.
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