Liberated PPMS'ers, please post your experiences here!

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

Postby Donnchadh » Sat Aug 14, 2010 3:32 pm

Donate a pint of whole blood on a eighth week cycle, and take three different oral iron chelating agents. IV chelation would be better and faster but I can't afford the $150 a treatment cost.

Donnchadh
Last edited by Donnchadh on Wed Aug 25, 2010 7:19 am, edited 1 time in total.
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Postby eveable » Sat Aug 14, 2010 4:48 pm

I will see soon. I am on a waiting list to have the angioplasty. I was diagnosed with PPMS in 2001. My symptoms were and are a weak right hand and right foot drop. I was rediagnosed with RRMS in 2003 by a different neurologist and started on Copaxone May 2003. I progressed from 2001 to 2003 a bit, went from a 2 to a 3 EDSS. Since starting Copaxone, went from a 3 to a 2, but the EDSS is subjective. I do not have MS fatique, heat intolerance or brain fog. My only problems are the ones I started with in 2000, right foot drop and a minor weakening of my right hand. I really think this labeling is nonsense, what we are looking at is central nervous system damage from blocked veins. I am looking forward to having a pulse and blood flow in my right foot again.
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Postby blossom » Sat Aug 14, 2010 8:10 pm

my feet and hands had been warmer than before procedure and a few very small but hopeful like not as stiff. yesterday i kind of felt like a light switch on and off with temp. in body and today my feet are like ice. the numbness is still in left leg that i did not have before. so i know it did something. it is still early so i'm still hopeful. i'm gonna wait a while to post and hope i have good news. in the meantime i'm gonna try to get tested for tos. i think they have said that if you have tos it is an indication you may have ctos. that fall i took in 1990 squished a lot of things. it threw my computer chips in my body all out of wack. wthin a week i started dragging my leg when used much and all downhill from there. i was such a healthy 43 yr. old. so i hope my senior yrs. are better than middle age. i'm still pretty healthy-i just can barely move-d*** it.
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Postby blossom » Thu Aug 19, 2010 6:15 pm

just bumping this up. bump, bump.
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Postby Fernie12 » Thu Aug 19, 2010 6:50 pm

Thanks for bumping this! It's 2 1/2 weeks since my procedure and I am feeling less brain fog still. My fatigue is still there in my legs - not quite as bad as prior to the procedure, but not as good as right after. Guess my blood flow is regulating itself. I'll keep y'all up to date as we move ahead!
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Postby newlywed4ever » Thu Aug 19, 2010 7:16 pm

Yes! I agree - keep this thread going! My liberation was exactly 2 weeks ago today. I immediately felt that my affected right foot was warmer, better balance and less fatigue. I wasn't too sure for the first week about heat intolerance because everybody was miserable from the heat. The past 2 days I was worried that I was restenosing - right foot was colder thus making whole leg feel heavier. Today, however, I went to the state fair - walked all over the fairgrounds plus having to park on the "back 80"; with my trusty cane, of course, BUT the past 2 years I had to rent a wheelchair because there was no way I could walk that far. Needless to say, I'm elated! Looks like some days are going to be better than others...I just hadn't anticipated the nagging fear of restenosis (even though I've always known that it's a very real possibility).
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Postby broomdancer » Fri Aug 20, 2010 6:18 am

Hi everyone: My husband was dx'd ppms in 04. His left side was most effected with spasms, drop foot and tingling in fingers and arm. No brain fog and fatique only in the past year and burning sensation with a purple hue to the soles of his feet. Could only move his neck 90 degrees and it was discoloured and swollen.
Liberation took place in Katowice, June 15th. The following day noticed improvements such as no drop foot on our way to dinner. While trying to keep from yelling from the roof tops I managed to controll myself and replied, That is truly amazing...
During the next 6 weeks he improved continuously until a motorcycle trip we took on week 7. He lost some of his gains and fortunately, not all of them. I contacted Dr Simka and his remark was, It is a phenomena that we don't understand yet but it usually occurs in the 2nd or 3rd month.
We will be getting a doppler at the 3 month mark and see if there is any stenouses. He had 2 angies in his left and one in his right. His Azygos vein, while a bit crooked he felt it was fine. He is beginning to regain some of what he has lost, at a slower rate but at least it is a good sign. Also some addtional improvements like being able to cross his knees. His energy level is amazing, I am finding it difficult to keep up with him and I am naturely high-energy. So to date it is all good...I hope and pray that everyone gets this chance and I will continue to spred the word and help with funding for the research and treatment for CCSVI.
Thank you to all who helped us with this journey. The list of names are to many to mention but we thank you from the bottom of our hearts for all the time and effort that is put into this forum.
Take care
Diana
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Postby blossom » Tue Aug 24, 2010 5:09 pm

would like to know how you ppms people are still doing. most of my little gains are gone. but the numbness i got immediately after procedure remains. still trying to be positive. any of you still improving? have anyone of you been treated twice? anyone know if there is a plan b they are working on? i know it is too soon to tell the whole story of what benefits we may or may not get but would like to hear anything. a lot of the people do not state their type of ms and i assume they are rrms but this thread is just ppms. i hope to hear some of you are doing better. just wanted to bump this up again because ppms is kinda a black sheep.
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Postby newlywed4ever » Tue Aug 24, 2010 7:01 pm

I am only 19 days post-procedure and have the energy to pursue physical therapy :) I started today and the therapist could see improvement from the last time she saw me which was a little over a yr ago. There have been a couple days that I worried I was restenosing but then I realize that I'm walking further/standing straighter, etc. The foot drop is still there (and may always be). I'm very anxious for the 3 month checkup and I'm a little too aware that I may lose these improvements :( I, too, appreciate this thread & the posts.
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Postby blossom » Tue Aug 24, 2010 8:14 pm

newlywed4ever, thanks, glad to hear you are doing well. i'm sure age and length of time and extent of disability has a lot to do with stuff but still when you are told that we are the minority and and all that stuff it is great that even if i don't get to run a race and it stops progression will be great. here's to you continuing to improve.
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Postby Fernie12 » Wed Aug 25, 2010 6:00 am

My angio was on Aug 2nd. I had felt like my stamina in my legs improved in the 2nd week - this is gone, but just coulda been a good couple of days... I still feel more clear-headed than prior to the procedure. I am looking into Iron Chelation Therapy, but it seems hard to come by so far. Am taking Apple pectin as a start.

I still remind myself that I am hoping for no progression in my disability. This is still my goal. So far, so good :-)
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4 days later

Postby val57gal » Sun Aug 29, 2010 5:12 pm

I had my 2nd procedure on Wed. Here's the scoop:

Dr. Arata was training Dr. Harris so he has a 2nd for his new treatment center. I was pretty out of it, so my account of the procedure itself will be spotty!

Went in on the left this time. I had some indications of May-Thurner. I don't know exactly what he found, but I know he didn't place any stents. If he ballooned, it didn't leave any tenderness.

Ballooned the azygous vein extensively. Note: I was quite aware of this part, and it was EXTREMELY unnerving. All my chest & back muscles clenched up in response. They gave me more sedative and so I missed the transition...

Next thing I know, he's going in from the right and ballooning my restenosed jugulars. Pretty wide, too--I think he said 20 millimeters (must be with 2 balloons).

So what are the results? I've felt very good since then, tho my neck is tender and I certainly feel it when I cough or bend over too far. No other soreness.

1) My bladder control seems better--I slept thru 3 nites in a row! 2) Upon waking, I am not stiff at all as I used to be. 3_ My left hand will now unfold by itself in the morning. 4) The swelling in my feet and ankles is much less, tho it is still there.

And I think that's all. But since my main hope is to stop progression, these little signs are darn exciting.

I'll post again after my follow-up visit on Friday. I'll also ask Dr. Arata a lot of questions about his new clinic and post the answers in those threads.
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Postby Fernie12 » Sun Aug 29, 2010 5:52 pm

@blossom - Is there a chance you restenosed? If I were in your shoes, I'd check in with the Dr. who performed the angio... or another in your area.

I am still feeling very attentive and awake! Physically, no changes yet, but I am moving more than I did b4...mostly cuz of the alertness!
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Postby Rokkit » Mon Aug 30, 2010 7:31 am

Val57Gal, congrats on what sounds like an extensive re-treatment. Thank you so much for posting here. I hope your improvements continue!
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Postby blossom » Mon Aug 30, 2010 3:03 pm

fernie12, could be i restenosed but the numbness was immediate. to get checked around here will be tough. to travel it was hard but i'm gonna try to get closer but even at that they won't just take you. you gotta get on their list. i'm more concerned about clotting. i'm on plavix and asparin. right at this moment i could hang it up. i've blundered through this best i can on my own i understand things but yet i don't. i have questions that are probably really stupid to a lot here because so many are like doctors themselves which is great i wish i could and we all have learned from everyone. i wish i knew what to do and all this. i'm having a senior moment along with worsening ms as if it wasn't bad enough. my little bit of a brain i have left actually feels bruised and tired. yet, i still feel the dr.'s are onto something or noone would be getting better or worse. oh well, i gotta figure something out here. when they say it's too good to be true doesn't apply to ccsvi but it does need a lot of fine tuneing. if more dr.'s get to doing it everywhere so you don't go clear to tim buck too t get checkups etc. it will be better.
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