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.