Tuesday, July 28, 2009

Some positive changes and some really bad judgement

Well it's my two week anniversary of the surgery. It feels longer than that, but it's not. There have been some positive changes that I definitely want to post about because they have taken place in my "100% symptoms". Those reading with MS know what I'm talking about here. Since this disease is characterized by good and bad days in terms of level of function, there are some days where you can do more than others. But we also know that there are those symptoms that are always there no matter how good or bad you feel. For me two of those are my eyesight and my balance and coordination. Every time I get hot, my eyes go foggy. It looks EXACTLY like this: http://mult-sclerosis.org/opticneuritis.html . I mean exactly. The car on the right is when I'm not hot, or even warm, and the car on the left is when I'm hot. It does vary in terms of intensity with how hot I am, but it's never not been there. Not one single time in 8 years. Well this post is all about both a positive change and this is also where the poor judgement comes in. By the way, if that link doesn't work, just type it in; what are you lazy!

So my wife is planting about a 20 x 20 flower bed and the ground needs to be tilled. My good buddy has a nice tiller that he will let me borrow, so I volunteer to go get it. I would have asked him to deliver it a few months ago and that's the truth. So I get it home, we get it off the truck via ramp and I get set to show my wife how to operate this big boy safely. Well after I have her pull the start cord (not supposed to do too much with the right arm since that's the sore side, duh) I decide to demonstrate how to horse it around a bit and was just taken aback that I could even do it. My wife was kind of slack jawed and telling me to not continue, but she's amazed also. So I do the whole damn thing. It took about 45 minutes and it was in the direct sunlight and was in the low 80's temperature wise. Well I'm covered in sweat, and guess what? I could see just fine. I mean not even a little fogginess. Now my legs were absolute toast, but I didn't care, I could see and was hotter than a firecracker. Plus, I do really poorly on uneven ground, and I was MAKING uneven ground and walking all over it and not falling over. It was awesome. My legs even recovered rather quickly and I was very, very happy about all of this. So it ends up being a great day. I took a walk later in the day (that would never have happened a little while ago) and I was never dizzy the whole day (that has happened, but rarely, and never when coupled with this strenuous of activity). That is also my almost constant companion. And then later in the evening at bedtime? Let your mind wander but no pharmacologicals were required, 'nuff said.

Before I get into how that was really stupid, I want to talk about changes that I've noticed in my balance. When I go up stairs, I just kind of fall into the right side wall and rub all the way up. It's either that or have two tracks up both sides from my hands because I don't do stairs with out holding onto a wall, a rail, or on all fours. My wife is the one that pointed this out to me. I have just been going right up the middle for about a week now. And I also don't do the 'one stair shuffle' where you just do one stair at a time with both feet being on each tread before you do the next one. I've been doing them like normal for about a week. And I've been dizzy far less often. This is all really good stuff for me. Oh, and I haven't had an 'accident' since the surgery. Not even at naptime which is a bad time for that. So I am seeing some things in the areas that aren't just me looking for stuff to get better. I can't will my eyes not to go foggy. I haven't been able to will much of anything for a while.

So now the stupid part. I am so sore in my head and neck it's not even funny. I even broke down and took a percocet, but I coupled it with some nausea medicine and it actually didn't make me that ill. So I'll pay for that, but hopefully only for a day or two. Last night my head and neck hurt so bad it was like a couple days after the surgery. I'm typing this, so hopefully I just made myself sore and didn't aggravate anything. Why do I do shit like that? I was doing so good taking it slow, and taking "baby steps" as I know I should; taking multiple short walks to keep the legs moving and not lifting anything. Well I wasn't lifting the tiller, but people who have used one know it's not exactly mowing the lawn. It must be something in my psyche; "hey this doesn't hurt! Let's overdo the hell out of something!" Not wise and I'm pretty upset with myself, but hopefully it abates today. Like I said, I'm typing this, so it probably was just sore, but last night that dude really hurt. I am not returning to work until Monday of next week, so hopefully I get "unsore" and can post more good stuff; that is of course if things keep going in that direction.

Friday, July 24, 2009

Important link to symposium paper

Here is an important link to a paper of Zamboni's findings for free.

http://www.fondazionehilarescere.org/pdf/CX.PDF

I haven't read it yet, but will do so promptly!

Thursday, July 23, 2009

It's been a week

So I felt compelled to post. I'm not feeling any relief from MS symptoms yet, but it's been such a short period of time, plus I had a bad reaction to the Coumadin (warfarin). I got a 3 day rash that started on the 5th day post op. I started just scratching my hairline a little bit, and then I kept noticing that I was scratching everywhere on my torso. So I lifted my shirt up and voila! a rash! Well it's the third side effect listed on mayoclinic.com under "non-common" side effects. First the morphine, then the percocet, and now the warfarin. I'd make a horrible heroin addict. Well it's like I said in terms of my MS. I really don't feel anything yet. The neck and head pain are cut down big time, but there is still some pain there, but totally tolerable with tylenol or ibuprofen. Ibuprofen isn't a good one when you're on warfarin, so I tried Tylenol since it isn't an NSAID. It worked, but it doesn't last very long. I never liked that stuff for headaches either. I wish I could just take my 800mg Ibu's and get on with it, but the stents need your blood thin, so I didn't.

With all the pain I was feeling, and not being able to tolerate the good stuff, and then having to go off the warfarin because of the rash, I got a bit discouraged. I did because I had been reading other's good results with clarity of thought and heat tolerance that happened right out of the chute. But there's a catch there. Those who have had some relief in those areas have not had it for 8 years, nor did they have as high an EDSS score. BUT, they each had severe fatigue that affected them a great deal. My one friend, whom I'll call M since I didn't ask if I could post her name, is like the energizer bunny now; running AFTER work, changing tires, and is back to work. Now that speaks. She did have low EDSS, but that test is so misleading. Let's say you can run, jump, see well and walk a straight line. You'll have a low EDSS. However, if you need two naps a day, can't concentrate and can't keep your occupation because of crushing fatigue, then your MS is no less debilitating to your quality of life than someone with a high score that can't walk very far, but can still focus at work and doesn't require lots and lots of naps. That's the goofy thing about that measuring stick. There should be some sort of "life impact scale". But there's not, so I'll just speak to years with the disease. By the way, I mentioned that it was more than one. The other guy had the same thing, really bad fatigue and headaches and a pretty good case of depression. That all seems to be abated for them. That is wonderful news to me.

A friend who frequently calms my soul explained it to me in terms I'd like to share for what I'm hoping for. The thinking is that remyelination should be happening in the damaged areas once the reflux is corrected. Remember that the reflux 'fills your head with deoxyginated blood'. Your immune system is in there cleaning up from all the cellular death (these are called macrophages). This keeps the oligodendrocytes (your CNS repairmen) out. The clean up crew has been in there this whole time cleaning up the dead cells. The theory is when we are young, your repairmen can stay in front of damage that would result in an outward expression of symptoms. Once that scale is tipped, BLAMO, you have MS and it is a constant struggle with the immune system winning out over time. We also lose something called plasticity as we age, which is simply the ability to repair ourselves neurologically in a hurry, so it makes sense on that level that we don't start showing symptoms much earlier. So you need your oligos (repairmen) in there and you need the janitors out as they are a sign that damage is still occuring. After all, they aren't supposed to be there in the first place, but throw in a bunch of cell death, and here they come. Most people understand strokes, where your blood (oxygen to your brain) is COMPLETELY cut off by a clot on the feed in side. So you suffer brain cell death at a hugely accelerated rate compared to something like this. In this case, your brain is getting oxygen in, but once it's used up, it is refluxing back into your brain when it should be draining down your jugulars. So you still have oxygen in there obviously (hey, we are still alive!), but you also have hypoxia.

So it stands to reason that for someone who this has been working on for a while, may need more repairtime. And it might not all get repaired as most of us dread the thought of actual nerve death. Don't know if I have any of that, but it will take more time for me to see anything, at least that's the story I'm sticking too. There's another fellow whose had this done who had a screwed up bladder like mine. Those who know me know that my bladder has kind of taken over my life. Well his reports on that front have me green with envy. He spoke of sitting through a 2 and a half hour meeting the other day, where that would have simply been impossible before. I know exactly what he means. The only way that type of time passes for me without using the bathroom is to not drink for hours, then use a self catheter, and then hope for the best. I want me some of that.

And so I post because I'm antsy even though I have nothing to report but a greater understanding of what I could expect if all goes well. The seeing stars thing when I raise up from bending is still gone, but I think that was a direct, first tier symptom, of the reflux. Hopefully more to come, and more good to come.

Sunday, July 19, 2009

So the procedure hurts

Well I thought I should post something since everyone knows I'm done. However, sitting at the computer is akin to having someone give you the Spock neck pinch X10. They told me it was major surgery, but those of you know me know the ants in my pants and I want to get back to it straight away. At any rate, this will be brief because at present my neck and head hurt so bad that it's over riding anything positive I may be feeling. And Erin, I will answer your email first thing. Out of everyone I know with MS, and I barely know you, I want this to work the most because of you. I'm a Dad, what can I say? The way everyone speaks of you and the few times I've just briefly met you make it break my heart to think of you with this so young. I don't want to make you forlorn, but that's the truth. I think in a lot of ways that's why we are all doing it. Absolutely the motive has a massive amount of selfish impetus. But there's also an altuistic side to it that sometimes helps when this pain is sucking!!!

It does hurt like hell at times, but I'm a pain wuss. I like feeling good. My good friend Joan reminded me that the dynamic we who've had this for a while have created probably isn't helping. Her husband verbalized it and it helped a lot. Those of us who have MS pain are used to "oh shit, here comes some more pain I'll have to deal with for the rest of my life", so we view it all that way. Bad things that happen stick around. Once again those who have this crap will understand that inherently. I thought there was a chance I'd be back to work Monday. Ha! Well there is only one thing I've been noticing and it's even with the pain; and it makes perfect sense for how I understand CCSVI. I can't catcher's squat (i.e. lift with your legs, yada, yada), so I bend at the waist. 100% of the time my vision will start to close in, to pulse with my heartbeat and I will see stars and swoon a bit when I get back upright. That effect is greater if I'm bent down looking for something for a while. It also "trips my trigger" to start being dizzy and the dizziness just increases through the day. Well that seems to have taken a break. I hope it's gone forever, because being dizzy all the time, and at times "can't do anything dizzy", is for the birds. At any rate, that's very preliminary but seems to be gone.

There is one other thing I'll mention, but I haven't been using my legs enough to know if this is really happening or it's just part of my slothishness (hey, it's a blog, I can make words up). My legs used to tingle from ass to ankles after very little use. This was the start of them getting to the point where they hurt a lot and where I started limping. I haven't felt that tingling yet, but I haven't tried to walk around the block either, so take that with a grain of salt. Well Barry Bonds is beating on my neck with a Louisville Slugger, so I'm signing off.

Wednesday, July 15, 2009

It begins again (I hope!)

Well I made it through. Dreadful night and morning as we discovered, on the fly since I'd never taken either one, that I don't tolerate morphine or percocet well. So I'm doing my recovery with Rx Motrin (woo hoo!) But since they were allright until I sat up and all the blood rushed out of where it was pooling in the supine postition, I'll maybe take a percocet tonight as the Motrin isn't as good on the neck pain, which absolutely sucks, but the others before me only took a week or so before most of the pain lapsed and reported that it was better each day.

So to say that this was a trip would be a massive understatement. I felt like I was on the set of "House". There were TV monitors all in front of the doctors and they didn't even look at me! It was wild. And you're awake so you can hold your breath when you need to and things like that. They go in through your groin (no jokes Beek) and when they put the stent in you can hear it from the inside of your ear! I needed two stents in my right jugular and had a weird anomoly in my left jugular that he is leaving alone until my 2 month check up. This guy is a world renowned interventional radiologist, and he'd never seen this particular deal. Don't I feel special. Well all I can report on is that I'm recovering from pretty major surgery now. Nothing like getting your ribs cracked, but it was 2 and a half hours long and you are absolutely whacked when done. So if this helps my MS, I won't know for days, except I may venture out in the heat and see how I do tomorrow. That's probably not wise, but I feel so much better than I did this morning, it's sort of energizing.

My neck hurts like hell right now so I'm not going to post much, but me and my mother chronicled it all with pictures and everything so when my neck is up to sitting in front of the 'puter, I'll post more. I feel sort of narcissistic posting about all this that's happening to ME. Like I am all that and anyone gives a damn. However, I remember hanging on every word of Tim Wesner's blog detaling that stem cell trial that I was in that flopped. If the 400,000 or so folks who have it are as non-plussed with the current therapies for MS as I am, then I actually feel sort of duty bound to share. If this actually works? I don't even let myself fantasize about it as the fall would be just too far if it doesn't. The only things that sneak through are thoughts of what I could be again to my beautiful wife and daughter. I love them like I didn't know was possible. But I suppose since I did that and am now doing this, that if it doesn't work I'll just say "NEXT". You have two choices with this shit. Stay uneducated about the new stuff, or just take the oh so marginally effective FDA approved therapies that don't do anything for people with advanced MS and watch yourself detariorate with a ringside seat. Looking back, there just aren't too many people who have advanced MS that WEREN'T on the therapies and look where we are now. In the proverbial shitter. So as I have described my take on hope, I have to live it and the current drugs don't give anyone who's had MS for years any hope and they cost a fortune. When stuff like this gets posted on the MS forums that are moderated by the biotechs, they delete them. They are just SO all about patient care, eh?

Monday, July 13, 2009

Well I got 'em

Well I have clogged up jugular veins! My azygous vein is normal, but my right jugular is basically shut, and my left is "flat". It also narrows significantly, but still has some bit of flow. He's going in tomorrow at noon to put the stents in. I can't wait to see if this has a positive effect on my disease. Stanford is a wonderful place. It really is. Great people and the Dr. is incredible. He talks to you like you would talk to one of your buddies. And I saw no less than three placques that said "summe cum laude" on them. I can't see that well so I didn't get the details, but the guy's brilliant.

He came in and we talked and he was very honest. He told me if I knew of the immediate improvements that most were seeing and he was like "I dont' know what's what yet!" Quite refreshing from a Doctor. Most of them have to be in the in charge role and he was just extremely pragmatic about this being so new and untested. He didn't once allude to anything that I should expect or anything. But as I've said before, my expectations are simply to wait and see. So I'll post tomorrow if my neck doesn't hurt too bad about how the surgery went. I'm absolutely beat but wanted to update tonight about what happened today. I't's 10:00 out here, but my body still thinks it's 1:00am!

Saturday, July 11, 2009

Reality time and thoughts on Laetril

OK,

This is it. I'm leaving tonight and am anxious as hell. Some might think X-mas morning type of excitement but they would be wrong. I have no idea what this will result in; we need to all understand that. I am looking on this with more than a healthy dose of skepticism bourne from 8 years of crashed hope and unfulfilled expectations. More like an anxious spouse waiting for news on their other half's heart surgery. Not having a clue, awfulizing, fantasizing about what it would be like to be able to pass a sobriety test sober and everything in between. Make no mistake, I want this to work more than anything other than having a healthy child. However, the MS mantra "hope for the best but prepare for the worst" plays a huge role in my disposition. You need to be that way in order to stay sane sometimes.

So I take a step back and think about all those who have horrid diseases with no answers who've come before me. There's been snake oil, clinics in Tijuana, the Esperanza Institute in the Bahamas (MS'ers will know what I'm talking about there), and of course things like laetril, the supposed miracle cure for cancer. All I can really remember about that drug was the lampoon Saturday Night Live did on "spray on Laetril". It was a funny skit (you can probably find it on YouTube), but probably not to cancer patients who looked on it as I look on this. So I am really doing something just like that. It's different in the fact that we are actually fixing something that isn't functioning properly in the body vs. blind faith that this or that chemical will be the miracle cure. So it IS different, but not in my expectations for what I hope it does for my MS. We have no clue yet and won't for some time, but I understand Hope and I understand that people like me need it like air if we are to continue and stay positive and be able to look to tomorrow. It's not something you can relate to until you're in a position to need it, but Hope is the most powerful thing that people in bad situations need, and I'm dead serious about that. I'll use a quote from Nietzche to make that point and sign off and quit being windier than a bag of assholes for now. He says "He who has a Why to live for can bear almost any How". Man I wish I was smart enough to come up with shit like that! I'll see you all soon.

Lew

Dr.s pontificating on Zamboni's work

Ok,

Here is a link to some of the comments that a couple of Dr.'s who have really looked at his work have posted on his original paper. This is good stuff. I don't understand all the terminology, but I understand a great deal of it. I'll leave it to some eggheads to molecularly figure all of this out. However, you can feel that these guys can't debunk it either, but rather both come to the conclusion that this should be rigorously investigated. The thing I will always come back to since I don't understand it all is that the lesions seem to be right in line with the occlusions. Could the lesions be caused by this? I think the Dr.'s both say "maybe". So it's more heartening than disheartening because you should see Dr.'s comments when a goofy theory is posted. It's like a puppy in a shark tank. At any rate, here is the link for some "light" reading! I take off to go to my mom's today in Columbus and will be leaving tomorrow. I'm nervous, but not about the surgery. I'm nervous whether or not this will work or not. I think we all are. But when your choices suck so bad (the current shitty ass drugs), you will try anything when facing full on disability. Wish me luck and pray if that's your thing, but pray for all of us, this disease really sucks for me, but I know of about 400,000 other Americans who are just as anxious to see this work as I am. I'm sorry to have made this blog on such a shitty program that makes it hard to post comments. I just clicked the first "blog maker" that came up on Google. I'm also sorry I'm swearing so much this morning. I'm trying to work on that, but all the wonderful comments you have all sent me through my email and all the support is overwhelming. That coupled with the anxiousness about this being so close has 8 years of built up anger, sadness and frustration right under the surface has me very emotional this am. Happy trails to me! Here's the link:

http://www.thisisms.com/ftopict-7635.html

God I hope this works.

Friday, July 10, 2009

Just the facts about CCSVI

The woman who put all this together for us also broke it down in laymans's tems for people like me! Here is the text and it's pretty cool, but keep in mind that this is evolving by the hour. The Dr. out at Stanford who is doing this has cleared his entire summer to see nothing but MS patients due to the massive amount of inquiries he's getting. He's also a pretty cool guy and is more focused on the patients and making a difference in people's lives. I'm quite sure he could make a more than comfortable living staying in the cardio-thoracic field in which he has specialized in his career, but here we all are knocking down his door and he said "come on in!"

Here's the text:


1. What is CCSVI?
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. This slowed perfusion has been linked to fatigue in MS patients.

2.How is it related to MS?
Every MS patient tested so far has it. Over 100 MS patients in Italy have it. They were tested by Dr. Paolo Zamboni. Four patients in the US have it. They were tested by Dr. Michael Dake. Six clinically defined MS pateints and 3 probable MS patients have it in Poland. They were tested by Dr. Marion Simka.

None of the normal patients (controls) tested have it. None of the patients with other neurological diseases have it. Only people with MS.

3. So???? Maybe the MS lesions cause this. Chicken and egg and all that....right? Couldn’t the lesions do something to the veins?

Nope. We already have a couple of medical models for the process of Chronic Venous Insufficiency in the brain and spine....because it happens in other places in the body, and we’ve known about it for years.

a. Chronic Venous Insufficiency in the legs. This is a process which begins with reflux and blockage in the veins of the legs. The deoxyginated blood can’t get back to the heart, and it causes edema (swelling) and leakage of red blood cells and fluid into the tissue of the leg. This creates petechiae (little blood spots) or venous ulcers (really gross lesions on the legs). It makes collateral veins (called spider veins) that try to take the blood back, but can't.

b. congestive venous myelopathy. This is a process where blockage in the veins along the spine cause the veins to leak red blood cells and fluid into the tissue surrounding the spinal column. The result is demyelinating lesions on the spine. Paralysis, balance and bladder problems result.

4. Well...that’s all fine, but I’m on an immune modulating medication, and that will take care of this problem, right?

Actually, no. CCSVI has been found in all MS patients, whether or not they are on immune modulating medication. My husband was on copaxone for 2 years, but he had 2 blocked jugular veins. Dr. Zamboni tested 65 MS patients, many who were on immune modulating medication, and they all still had CCSVI.

5. How can I find out if I have this?

You need to be tested by a doctor who specializes in radiology, because in order to see inside the veins, you need a venography. This is where dye is injected into your veins to see the blood flow. Doppler ultrasound can tell you if you have reflux, but dopplers are very dependent on operator skill, and can give false results. The only way to be sure is to have a venography or magnetic resonance venography or your jugular and azygos veins.

6. My neurologist read the research and said it’s impossible, that I can’t have this. Besides, it's unproven.

That’s your neurologist’s opinion. This is just the facts, ma’am.
Ask yourself....are your neurologist’s opinions based on fact? Ask s/he what they believe causes the MS demylination process. And ask for the facts, not speculation.


So this is my primer for CCSVI. I hope the trend continues is about all I can say right now. I leave tomorrow and will post next when I actually have something to say about the actual surgery.

Monday, July 6, 2009

OK, I'm a moron

I forgot to post some "vital statistics" about myself. I'm a 42 year old white dude from Ohio. 5'8" tall and 165 pounds. Married to my beautiful bride Brenda (16 years now!) and proud dad to 13 year old Sarah. Former wannabe athlete who thought of himself as a decent golfer, an excellent racquetball player and pretty much average at everything else! Exercise addict before all of this and avid camper and sports fan. I'm pretty much your Joe who just wants to still walk when I retire. A little golf wouldn't hurt either, but right now we're focusing on keeping me on my feet!

And so it begins

Where to start? I've read many blogs, posted comments on many blogs, but have never considered starting one until now. I don't even know where to begin, so how about the beginning. I will figure out how to post photos and stuff on here in time, but I've always been a computer "user" extraordinaire, but never have I created anything other than stuff in existing programs, so give me some time. I figured out AutoCAD on my own, so I'll get this eventually. I'm also posting all of this from a computer that, how to put it, has issues. I have a teenager, so I'll just leave it at that (can you say Limewire, Myspace and other virus laden sites?).

So I'll give a bit of back story. I got my diagnosis of MS in August of 2001. I'd been showing symptoms since that March, so we'll say I've had this crap for 8 years. MS is a funny disease (aren't they all to the patient?) in that there are lots of us who have it, but it varies in terms of what symptoms you get and the actual severity of how it affects your daily life greatly; probably more than any other disease, and therein lies all the fun. There has never been one single characteristic, other than shared symptoms, between the different variants of MS until now (it's early, that may change, but so far so good). I'll get to my cursory understanding of that after a bit. This is all about the procedure I'm getting ready to have, but it's mostly about how I have to try and try to understand how I'm going to keep going forward if it doesn't work, because I'm at the point of this disease where things like home modification and wheelchairs and stuff like that are right on the horizon.

I won't bore you with all the details of my particular MS case. It sucks for all of us who have it once it really shows up for real. MS can be pretty mild for many years in the beginning, and even for life for some people lucky enough to have it that way, and it can lull you to sleep. I ran every day pretty aggressively for about the first five years. I have problems just walking now. And that's all happened in the last 2 or so years. So why the blog?

The procedure I'm getting ready to do could potentially stop the disease process. It hasnt' been proven out over a long period of time, which anyone who has MS will tell you will be the true test. This disease has so many quirks, not the least of which is long periods of disease inactivity, so saying anything "works" is something I won't do until years and years of no disease activity. Hopefully this procedure will stop it and allow my body to get to the business of fixing itself.

What is this thing I'm getting ready to do? Endovascular surgery is the actually procedure, but it's aim is to correct something called Chronic Cerebro Spinal Venous Insufficiency, or CCSVI for short. For years doctors have labored using the autoimmune model to categorize and go after MS. There are a lot of problems with this model. There is no antigenic target, and as stated before, there are many problems with it because there are just so many exceptions and that nagging problem of the three types of MS not having a common clinical thread. So it comes as no surprise that the drugs that are out there for MS have very marginal percentages of effectiveness. Some might even say they don't work at all since a great deal of us (a majority) still keep right on getting worse while putting all of this crap in our systems. To me, the people who show effectiveness could quite possibly simply be in a "quiet time" of the disease. I say this because I've been on two of the FDA approved therapies and I've just kept right on getting worse.

So what is this CCSVI thing? Well a doctor in Italy named Dr. Zamboni (insert ice machine joke here) stumbled upon the first common thread ever found. He discovered that every single MS patient has clogged jugular veins and/or a clogged azygous vein. The azygous is like your jugular vein, except it is the main one for draining deoxygenated blood from the spine. I can't get too technical here, so I'll just say that he tested over 100 MS patients against healthy controls and ALL the MS patients had it and none of the controls did. Very exciting thing to find to say the least. So the next step is to perform endovascular surgery and correct the problem. It's not like this is a roll of the dice. It may be in terms of what it may or may not do for MS, but it's a clinical problem that would be indicated to be fixed if it were found in anyone.

So I go out to Stanford University on July 13th to get this looked at and fixed. Each and every one of us who is having this done is certain that they will be the first person to NOT show this characteristic; but the first 8 who've had it done at Stanford have all had it. So far, so good. I'm sure I'LL be the one now, but so were they and they all had it, so fingers crossed. I think this is the dynamic that one creates when they are constantly let down by everything they've tried to this point. You get your hopes up only to have them dashed, so the coping mechanism is to be as pessismistic as possible so you don't have such a far drop if things don't work out.

There is so much detail that I've not included in here that I feel like I'm "leaving out". However, I have created this to track the impact it has on my life, not my MRI. Also I realize that with the exception of the people who frequent thisisms.com, this will be the first time lots of people read about this and we tend to speak with a base of knowledge gained from hanging on every letter typed on this subject for the last 1/2 year or so. Consequently if you have MS and you don't belong to thisisms.com, you're missing out on the best place for ALL things MS on the web. The people there are amazing and one of the people on there is actually pretty much responsible for the rest of us knowing about all of this and having the opportunity to get it done now before it grinds to a snail's pace in an FDA approval process. It takes a special person to just keep driving away until you find someone willing to listen about something they didn't learn in medical school and my thanks go out to her from the bottom of my heart. Most people would be content to just get real educated about the concept and mention it to their doctor or wait around until you can get this done anywhere and fall short of actually arranging a doctor to actually have the balls to do it. I love you Joan.

As MS gets real, it also gets real scary. When you're world just keeps getting smaller and you start not being able to even come close to accomplishing what you want to do in a day, it is the most frightening thing in the world. However, there are people who handle situations like this with grace, and there are others who puss out. I have to be an example for my friends, anyone who cares to listen, and most importantly my wife and daughter. Hearing them talk about taking vacations and stuff without me pleases me to no end because they need to live their lives, but it also rips my heart from my chest. I was a definite 'life liver', but so were/are so very many people who have something like MS or cancer or something else. It's not how bad it affects you, it's how you respond to it that will be your legacy. I don't want anyone to ever think I just gave up. If this is it you'll find no one more grateful, but if it isn't, I need to be able to move on with life even though my ability to move is becoming severely compromised.

So thanks for reading and stay tuned. Hopefully you will see me post of waking up from a nightmare almost a decade in the making. If not, hopefully you can read about how one person deals with handling a disease that tries to rob you of your soul. It may take my body, and it may not, but it can't ever have that.