Wednesday, October 27, 2010

Close to my 3 month date

So here I am, at the end of October. This may be my favorite month of the year. So much relief after the hot Texas summer. The heat still turns my legs to noodles so yay for fall!! I almost feel like I am on a rollercoaster ride. Yesterday things felt really great. Today I have to say not quite the same. I am working to find a place to do my 3 month followup scans of my jugular veins. So far I have not had luck finding the right dr.

I feel a little confused as to whether my hope to have things be better had me convinced or possibly I have some restenonsis going on. I really want and need my legs to be stronger. I know I need to get this recumbent rower I have my eye, on to help strengthen them. Has to be next month though. Financially a bad month to get it.
I am taking real estate classes. I thnk I will have my license by the first of the new year and will be diving into that world. Once again, I am sure I feel better than I did a few months ago, I am grateful for that. Just anxious to be stronger. Really happy for the good overall feeling of health, I just want strength!! Patience my dear!!

Sunday, September 12, 2010

CCSVI is hope for people with MS, no doubt

So when I was diagnosed way back in 92 there was no medication available to help people with MS. Today 18 years later the only medications available help about 30% of the time at best. While spending around $25,000 per year to have miserable side effects, not to mention who knows what the long term side effects will be? The nuero drs are no closer than they were 20 years ago to figuring this one out. It makes so much more sense to let the vascular drs adjust your blood flow so that you do not have to take those crazy medications that are knocking down your immune defenses.
Please, MSers get your blood flow checked, then corrected with this simple treatment that has helped over 3000 already.
I am happy to say, I am still feeling alot better than I have in years! Working my legs and know they are going to get stronger. I still have terrible heat intolerance. I am hoping when I go for my followup they find another area or 2 to straighten out and maybe that will do the trick. I know I am in the early phase of this CCSVI learning curve and they are only going to keep perfecting it. Yay!!

Tuesday, September 7, 2010

The knee verdict

So I went to an orthopedic doctor, he x-rayed my knee. He said it looks good and thinks my problems are steming from weak muscles in my legs, especially my right. So this is really good news. I am going to get a recumbent bike and put it in my living room. Even if I can only start out doing small amounts I will do them several times a day and build strength. I am just happy there will be no scalpels involved!! Also going to do some gentle yoga classes. Things are going to get better and I am going to get stronger, period!!

Tuesday, August 24, 2010

3 weeks Post

Good things continue----- I recieved word that I am officially a person with insurance! Probably not a big deal to alot of people, but to a self employed person with MS, words I have not heard for about 6 years. Thank you President Obama for working so hard to get this pushed through. I know there are alot of people disappointed with the way he is doing things, but for myself, I could not imagine that job. Not to mention there is alot to clean up since our last presidents messes.

The best part of this is that I can now search out a place to rehab these legs and work on physical therapy with a professional. An even better part of all, of this is that I actually think I will be capable of getting stronger.
I continue to feel good. The spasticity in my legs feels much better than before the angio, I am very happy about that, as it makes walking so tiring when there is so much stiffness there.
My right foot still is not dropping for much longer periods of walking. The lift is just better. I think with strength it will continue. I did have a bad weekend with my right knee. It looks like there is some fluid on it and it is pretty sore. I took Chloe back to school shopping at the mall, maybe too much on this knee right now.
 As soon as I got my insurance info I was able to book an appointment with a knee dr. My insurance kicks in Sept 1, I made an appt for Sept 1. I am excited to hear the verdict of these knee issues and what I need to do.
I was at another outside cookout this past weekend. I can definately say that my heat intolerance is still there at 100 degree temps. I suppose that type of heat is not fun for anybody, but it does take the strength right out of my legs. Too bad because I like to be outside even when its hot.
All in all, I will say that my angioplasty was a success and it has only been 3 weeks. Looking foward to building on it more. I hope that all people with MS can at least be tested and then treated for this crazy condition that is causing the blood not to flow correctly. Please feel free to contact me if you need more information to make these things happen!!
Also wanting to add that the videos that we took do not really show that much. Honestly on video it is a bit hard to see the problems I have, unlike some of the dramatic before and afters that were part of what got me excited from the beginning. Just please take my word, my foot drop is better, not perfect but better. Balance is better. Heat intolerance feels no different, dang!!

Monday, August 16, 2010

Not so fast Gina

Ok, so today I was at a pool with my family. I spent alot of time in it and felt good. Then, about 15 minutes out of it getting things together to leave. It was least 100 degrees. It seems I pushed too much because I got very hot and my right foot and leg were pitiful. It went away pretty quicky as soon as I cooled off. So I am not getting complete relief from heat intolerance. I know know one understands the details of this crazy condition. I am still thankful for what has happened. I just know better than to be in direct 100 degree plus heat for very long!!

Thursday, August 12, 2010

Absolutely loving some of these new feelings!!

Took my nephew to the pool and even though it was hot my foot drop did not kick in!! I am so looking foward to some great physical therapy to get stronger.

I am really feeling more and more frustrated that this is not being broadcast to everyone with MS. It is so simple and critical!! Unblocking veins should happen for anyone that needs it, and my guess is one day we will see that these blocked veins are the beginning of MS. Please feel free to contact me to get on the path to make it happen!!

Sunday, August 8, 2010

5 days post procedure

Ok, here I am 5 days post procedure. I have had quite alot going on since last Tuesday. We flew back on Wednesday--full day
Try to catch up with some work on Thursday, full day
Friday, drive to Abilene 3 1/2 hours away to attend my sisters grad after playing more catch up with work stuff, full day again
Saturday, drive home from Abilene, bring nephew, watch ultimate fighting... till 12:00 am, another full day,
Sunday, church, grocery shopping, cooking dinner and heading to bed early ---period.
The house needs my attention and it is going to have to wait, I bet it will.

Still feel pretty good. I did notice after 1 1/2 hours grocery shopping my knee was feeling pretty crappy, but my foot was still not dropping as much as usual. That is my next step to have dr attention to. (my knee) Also going to get some accupuncture this week and really try to do some much needed recouping.
So maybe this next week with some normalcy and rest, I am going to be raving about how great everything is. Right now my right leg still feels better, I am just a bit exhausted.

Thursday, August 5, 2010

I love NY

The glass really is half full.


I went to NY with a strong feeling they would find something to work on. Not knowing for sure, but my research and my instinct had me convinced.
They found both jugulars to be 55% narrowed and what the Dr. called "irregularites" in the azygous vein. He ballooned all and said they responded well enough that he chose not to use stents.
My immediate changes are:
I can feel my right foot much better!!
The color of my right foot and calf are the same as my left (They had been a dark pink before)
My foot is not dropping
Balance on my stairs is much better
I have not had the choky feeling in my throat I was having
I have felt little to no spasticity
Later today I am going to walk my dogs and test my heat tolerance
A great baseline for pysical therapy is mine and I plan on getting stronger and stronger.
I'll keep updating, for now I have to be in the real world and get some work done!!

Sunday, August 1, 2010

Great commentary on CCSVI written by a fellow MSer.

A lot of people know someone who has Multiple Sclerosis. 350,000 people in the US alone suffer from this debilitating, crushing illness. I am one of those people.




Just nine months ago, an Italian Vascular Surgeon named Dr. Paolo Zamboni turned the world of MS treatment on it's head. Well, in so far as he was allowed. Zamboni's own wife suffered from MS, and her husband was determined to find a cure. After much research, he had a theory that iron blockages in the jugular veins, which were causing poor blood flow (and blood reflux back into the brain), may be contributing to the problem. He performed a simple one-hour angioplasty. From shortly after his wife's procedure was completed, to today (now three and a half years), his wife has not had a single symptom of MS whatsoever.



MS patients worldwide, as well as the medical community, were startled by this finding. How were venous blockages, called CCSVI (Chronic Cerebro-spinal Venous Insufficiency) by Zamboni, related to MS, which is thought of as an auto-immune disorder?



For the medical community, surprise quickly turned to skepticism. Why would a vascular procedure (that is, one related to blood flow), correct a disease that has long been assumed to be a neurological disorder?



For patients, surprise turned to excitement, and a desire to become test subjects. Not necessarily for any study, just to see if the simple angioplasty could change or halt the progression of their debilitating illness.



As of today, over 2,000 MS patients have gotten the procedure. The vast majority have had results nothing short of incredible. "I'm not waiting for the medical community, as slow as it is to approve anything, to take 10 years to approve this procedure. My quality of life and time left to enjoy my family is degenerating daily." It is this patient's, and many other patients' feeling, that early treatment with such a simple procedure, is worth every penny, regardless of medical approvals.



And it better be worth every penny, as patients are travelling around the globe, usually anywhere but the US or Canada, to get this procedure. Even without pricey international travel costs, surgery must be paid for out of pocket. This has meant families and friends raising up to 20,000 to have the procedure done.



MS sufferers feel that MS Societies in North America, as well as American media, have been turning a blind eye to what could be the biggest MS-related discovery to date. Besides one recent article in the New York Times (http://www.nytimes.com/2010/06/29/health/29vein.html), there is a very noticeable lack of interest in pursuing research and generating awareness for this unproven treatment.



MS patients, who might often claim that they are too sick to have much of an internet presence or voice, have taken social media and networking by storm, to get the word out. Not content to wait for Neurologists and the MS Societies to prove the facts, patients are creating blogs, chatrooms, online forums, and hundreds of YouTube videos, documenting their own results. One quick YouTube search under CCSVI yields over 1200 search results, with several more videos being posted daily.



In these videos, patients chronicle their BEFORE symptoms and their AFTER symptoms. The results, as reported by patients, are once again nothing short of startling.



There are a few patients who have not noticed any improvement of their symptoms post-procedure, and there are specific Facebook groups they use to discuss this.



I plan to get the procedure in January 2011. I would be happy to discuss my MS, the process of getting treatment, and my results. I have access to THE pioneer in Imaging techniques to diagnose CCSVI. I have encountered all the same obstacles as the average MS patient who tries to get treatment for venous blockages. I also have access, via social networking sites, to hundreds of patients who each have their own unique story to tell. I'm sure some of them would be happy to be interviewed.



Human Rights lawsuits are being filed by a few patients, who claim that denying them access to a treatment that can radically alter the progression of one of the most debilitating diseases in the world today, is cruel and inhumane. They cite the fact that venous angioplasty and potential stenting is already a treatment that has been proven for decades, to treat blocked veins. If hospitals would do it for any patient suffering from venous blockage, why stop when it comes to MS patients? Most hospitals will perform the procedure UNLESS the patient has MS, then it is denied.



The question each patient has had to decide for him or herself, is:



Is the American medical community being more, or LESS compassionate by requiring 6-12 years of study before they would perform a treatment that could significantly benefit the lives of MS patients and their friends or family?

____________________________________-
 LESS, my personal opinion.
Thankfully, I am having treatment here in the US, and expect it to be more and more common in the coming months.
1 Wake Up until I board the plane!! Yippee!!
Last 3 sentences written by Gina.

Friday, July 30, 2010

3 days and a wake-up

That is how guys in The Navy refer to the time left.

I am so happy this discovery has been made for all the MSers out there. Praises to Dr. Zamboni!! I am going to write a personal letter to him when I get back. We have alot to learn, but what we know, is getting blocked veins unblocked is helping alot of people.

I am also thankful for all my friends and family because I know that there is going to be a lot of praying and good vibes being sent our way, so thanks to all of you, and a big thank you to our heavenly father for all.

Saturday, July 24, 2010

August 3rd is just around the corner

We are heading to NY in 8 days. I am really trying not to have too much in the way of expectations, but if you know my personality that is almost impossible. I am a glass half full kind of girl. I have always thought it could be the reason my MS has been somewhat in the background of my life. I really am not thinking that so much anymore. I am sure that thinking positively is always better than not, at least it certainly feels better mentally. I have just been fortunate that the iron deposits (at least I understand that is thought the problem) have not landed in other places that could have made things so much worse. Even saying that, the last year or so has been rather difficult. I am now very aware that I cannot ever walk as far as I want, and if it is hot outside that is taken down even more. I live in Austin, Texas, so guess what? Alot of what I like and want to do, is outside and hard right now.
With all of the stories of success, I do feel I am also going to be one of those. Here goes that glass half full... I really cannot help it. I believe we are in history making times in the world of MS. Come on angio. Open up my future!!

Tuesday, June 29, 2010

Got the call from NY

I recieved a call from New York booking me for my procedure on August 3rd. Flights are booked, hotel reservations made. Today is exactly 5 weeks until my procedure. I am over the top excited. Talk about something to look foward to. More and more news of people "being fixed" are surfacing. Alot of people are having dramatic results. Some not so dramatic, but most all have improvements of some kind. As I have read over and over, it took time for the disability to surface, progress, in most cases. It could very well take time to heal these broken bodies. I am so very encouraged by the intense grass roots effort going on with this movement. Thank you so much to the early pioneers for forging a path. Thank you to Dr. Zamboni for having the deep desire to "fix" his wife. Dr. Zamboni, do you realize how many peoples lives will be positively affected in an incredible way? Not to mention the patients families, friends... It just trickles on and on!!
 It really was not just a matter of booking the treatment. I have read alot, communicated with alot of people, got on a few lists for possible treatment and here we go. I do believe it is going to get easier and easier with the proof that CCSVI is real. Today we are in the first phase of this wonderful discovery.  There is alot of info out there. Just search FB, you tube, the internet. Gobble up the info and push for healing yourself!!

It is so sad to me that alot of neuros, the MS Societys... are being so closed-minded with all of this great news and even better results of this treatment. The patients are supposed to be helped by these people and instead information is not even being shared. I was in my nueros office for a 6 month check in. I spoke to a few people in the waiting area. None had even heard of CCSVI. I gave them a quick bit of info along w/ my contact info. My nuero was at least interested enough to book an appt for me 1 month post. I can't wait to show him what I am hoping, are going to be amazing results!!
I plan on shooting some before and after videos to document the changes. Soooo, in the next few weeks I will post them. Stay tuned.

  Hoping for the best and praying for all the MSers out there!!

Gina

Tuesday, May 11, 2010

The beginning of the story/1988

It is 1988 and I am a hairdresser in Conroe,TX. Loving my new life with Randy, I remember standing behind the chair while working and noticing that my entire torso felt numb. Across my waist. Hmm, must be a pinched nerve is what I thought. We played on a co-ed softball team and I also noticed my left hand seemed somewhat uncoordinated along with a slight problem going on with one of my legs. The torso numbness went away, I got a brace for my left hand, thinking carpel tunnel. We got married in 1990. I had our son Dylan in 1991. We had stopped playing softball at this time so I did not really notice changes in my leg until I found it hard to wear flip flop sandles. My toes just would not hang on to them. With the hand problem never ceasing, and the new foot issue I was advised to see a nuerologist. An MRI was ordered and then the news "It is MS" was delivered. No major changes for quite a long time happened. I did notice that when I got hot things felt worse. My legs felt weak, like they just could not go as long or as far as always. In about 1997 I started Betaseron. Seemed stable. Then we lost our insurance and because I was feeling pretty ok did not worry alot about it. I had a pretty big flair in 2004 that left me with the "hitch in my giddy-up" I have today. I started Avonex at that point. I have developed what is called "foot drop". My right foot just feels heavier, weaker, less cordinated than my left. When I am hot, tired, stressed, it is more pronounced. I had been on Avonex until I started reading about CCSVI. I also learned about LDN around the same time. I decided that I was finished beating down my immune system with a drug that made me feel like crap once a week when so many of the signs of CCSVI are there. So today I am up to 4 mg of LDN. I hope I am realigning my immune system getting ready for a total transformation. My spasticity (stiffness)seems to be better than it was. I surely don't miss the "Avonex Hangover." Saying all of that, I suppose people should do what their gut tells them. Mine said no more immune repressing drugs. There is no proof that they do anything anyway, or should I say, not enough for me. Honestly, this last year has been the most challenging with my ability to walk distances without having a shopping cart in front of me or Randy close by for support. I guess I am at the 18-20 year mark they say most with MS are dealing with at this point. Less mobility, drugs or not.
My right knee has started hyperextending, "popping back". It gets worse the more tired my legs gets, which does not take much. We have a short walk we do with our dogs, about 1/4 of a mile is my max, and I use Randys arm for support by the end. Stairs are taken very slowly. A balance thing along with the weak leg. Now please understand---I do feel fortunate, compared to many of my fellow msers. It can be, and is so much worse for others. The thing is, I miss my old body. Randy and I fell in love on a raquetball court and the softball field. I know I am thinking very lofty. My dream is to be able to play raquetball again, but if all that comes out of this, is the ability to easily walk our dogs on a hot summer day it may be good enough. I will work hard to get a glimpse of the old body back though, just watch me!!

Saturday, May 1, 2010

A short concise explanation of CCSVI

Introduction to Venous Multiple Sclerosis



Chronic cerebrospinal venous insufficiency... it’s a chronic (ongoing) problem where blood from the brain and spine has trouble getting back to the heart. It’s caused by stenosis (a narrowing) in the veins that drain the spine and brain. Blood takes longer to get back to the heart, and it can reflux back into the brain and spine or cause edema and leakage of red blood cells and fluids into the delicate tissue of the brain and spine. Blood that stays in the brain too long creates “slowed perfusion”...a delay in deoxyginated blood leaving the head. This can cause a lack of oxygen (hypoxia) in the brain. Plasma and iron from blood deposited in the brain tissue are also very damaging.

This is a very short, concise definition. The procedure to fix the problem is angioplasty of the jugular veins and sometimes the azygous (chest) vein. When the drs find it hard to keep the collapsed or twisted vein open stents are sometimes placed in the area.

Friday, April 30, 2010

A thorough, really good explanation of CCSVI

CCSVI – a breakthrough
 What is CCSVI?
CCSVI – A Huge Breakthrough in MS



Written by Ashton Embry PhD for New Pathways Magazine. N┬║ 57. September/October 2009



In August, I received a message asking me what I thought about CCSVI in multiple sclerosis. I had the same reaction most of you did when you read the title of this article – “What the hell is CCSVI?” A Google search told me it stood for “chronic cerebrospinal venous insufficiency” and a PubMed search led me to a handful of papers on CCSVI, all authored by an Italian vascular researcher/surgeon named Paolo Zamboni.



The papers provided solid and mind-expanding evidence that an entirely new disease process was part of MS. It soon became clear that the concept of CCVSI had the potential to completely change how we saw MS and how to treat it.



The Italian researchers discovered that, in persons with multiple sclerosis, the veins which acted as the main drainage pathways for blood flowing from the brain back to the heart were substantially narrowed and even blocked. These included the jugular veins, veins along the spinal column, and other veins I had not heard of before such as the azygous vein.



The researchers had never seen these problems in anyone before. Their equipment allowed them to study the blood flow in the veins and to also take pictures of the veins. They found that all the persons with MS they examined had impaired venous drainage from the brain and that such a problem caused the phenomenon of “reflux”. This means the venous blood would flow back toward the brain as it established new pathways around the blocked and narrowed veins. They labeled this compromised venous drainage as CCSVI.



Improper venous drainage is well known in the lower torso of many people (e.g. varicose veins, etc). In some cases, it has been demonstrated that poor venous flow in the lower body can result in iron deposition and associated inflammation. Furthermore, sclerosis and degenerative lesions can occur with the inflammation.



Knowing the problems that poor venous drainage can cause in the lower torso, Zamboni and his co-authors offered the reasonable interpretation that the reflux action of the blood flow into the veins of the brain resulted in iron deposition and inflammation of the blood-brain barrier (BBB). Notably iron deposits have long been documented in MS lesions and it is well known that every MS lesion forms symmetrically around a vein. Such characteristics of MS lesions have never been satisfactorily explained before the Zamboni discoveries.



In the MS literature, there are two opposing hypotheses for how MS autoimmunity begins. The most popular one is that myelin-sensitive T cells are activated through molecular mimicry by a childhood virus such as EBV. The myelin-sensitive T cells then cross the BBB and lead an autoimmune attack on myelin.



The other hypothesis is that the initial event in the MS disease process is a breech of the BBB and the consequent exposure of the central nervous system to the immune system. This uncovering of previously hidden antigens not seen before by the immune system leads to an autoimmune attack on myelin.



With the work of Dr Zamboni, it now appears that the second hypothesis, the breech of the BBB due to impaired venous drainage, is the best explanation for the initiation of MS autoimmunity. In support of this, the researchers found that, of the 109 persons with MS studied, every last one of them had impaired venous drainage. Furthermore, of the 177 control subjects, a group that included persons with other neurological diseases and healthy people of various ages, not a single one had impaired venous drainage from the brain. Such a 100% separation of persons with MS from controls on the basis of impaired venous drainage leaves little doubt that such a phenomenon is very important in the MS disease process.



Another important observation made by Zamboni's team is that the pattern of reflux, that is, the specific pathway the blood uses to flow back to the brain, showed a strong correlation to the type of MS. Persons with PPMS had a different reflux pattern that those with RRMS and SPMS. Furthermore, the PPMS reflux pattern provided a good explanation why this form of MS is more aggressive and problematic.



The other convincing data that demonstrates that CCSVI is a key part of MS are the results from the use of a treatment which relieves the venous drainage problems. This treatment is called "the liberation procedure”. The problematic veins are first identified by venography. Then, balloon angioplasty is used to open up the problematic veins and, in some cases, stents are inserted in non- responding sections. The procedure is relatively non-invasive and is done in day hospital under local anesthesia. Access to the veins is through the left femoral vein in the thigh. Total time in the hospital is usually less than 6 hours and the subject has a compression dressing on for 24 hours.



Dr Zamboni has described the results of the use of the liberation procedure on 51 patients with relapsing-remitting MS. Eighteen of the subjects were treated in emergency with an acute attack and all of them had their symptoms completely resolved within a few hours to a few days. The other subjects had a greatly reduced yearly attack rate and, notably, the only ones experiencing an attack following the procedure were those who had a recurrence of the impaired venous drainage problems. The subjects also reported a dramatic improvement in chronic fatigue. In summary, it would appear that the relief of venous drainage problems results in major improvements of MS symptoms. This is further evidence of the major role that CCSVI plays in MS.



Finally the researchers noted that there was no difference in the severity of venous drainage problems between those using an MS drug and those not on a drug.



Given that CCSVI explains why PPMS differs from RRMS, as well as the occurrence of previously inexplicable features of MS lesions (e.g. venocentricity, iron deposits), CCSVI becomes a very compelling explanation for the initiation of CNS autoimmunity which drives MS. Further research is needed to confirm this.



Perhaps the most important question that remains is “what is the ultimate cause of the venous drainage problems?” Zamboni and colleagues did not offer any explanations/speculations on this. Hopefully, this question will be the subject of an intensive research effort. It is worth noting that, given adequate vitamin D in childhood prevents MS in most cases, vitamin D supply must have a substantial effect on the venous drainage system.



This new understanding of the MS disease process makes the use of the recommended nutritional strategies even more imperative. These strategies enhance blood flow, strengthen the BBB, counteract autoimmune reactions and quite possibly improve venous drainage from the brain. Overall, the Zamboni work provides further insight into why nutritional strategies work so well for many people.



In answer to the question in the title of this article, I am convinced that CCSVI is a huge breakthrough for MS. Correction of this problem with a relatively simple procedure may well turn out to be a very effective, long lasting, drug- free treatment for MS at the time of diagnosis. However, a great deal of research and clinical testing will have to happen before CCSVI is widely accepted as a key part of MS and the liberation procedure becomes standard procedure. In the past, non-drug treatments for MS have been marginalized, mainly for financial reasons. I predict it will be a long, hard fight to get the treatment of CCSVI from the laboratory to the clinic.



Source: ms-direct.org

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