Exposure at Work Progressing My Disease Due To BBB & CCSVI?

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

Exposure at Work Progressing My Disease Due To BBB & CCSVI?

Postby Lance1564 » Fri Feb 15, 2013 4:35 pm

These forums have so much good input. I'm seeking some perspective on my current place of employment and its potential effects on my disease progression. I work as a laboratory technician for an industrial chemical supplier. Even though the lab has adequate ventilation in place, me and other employees are exposed to the fumes of numerous hazardous chemicals. They're simply too aromatic for the ventilation system to capture them immediately. So my question is this: If the origin of MS is indeed a problem with the blood brain barrier being too permeable, is it likely that many of these chemicals I inhale make it across the blood brain barrier as they circulate through my blood, potentially leading to a more rapid disease progression? I'm conflicted as to whether to leave a very good job for different employment. The last thing I want is to work in a place that could be contributing to disease progression. I should note that I was treated in December for an 80% stenosis of the right jugular vein. All insight and opinion welcome!
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Re: Exposure at Work Progressing My Disease Due To BBB & CCS

Postby Cece » Fri Feb 15, 2013 5:36 pm

That's a tough one. It wouldn't be a bad idea to ask your neurologist.
Is there any way to wear a mask that would reduce your exposure? Does being at work make you feel ill? Do you feel better after a weekend off?

Did you have any improvements after being treated for the jugular stenosis? If the stenosis was the cause of the weakened blood brain barrier, it could be that the blood brain barrier will be improved now that the stenosis is treated. But the blood-brain barrier is also impaired anytime that there is MS inflammation in the brain, because that inflammation also affects the venules and capillaries. A different theorized effect of CCSVI blockages is that cerebrospinal fluid flow is impaired. (CSF flow drains into the sinuses which drain into the jugulars, which is where the blockages often are.) One of the jobs of cerebrospinal fluid is to bathe the brain and carry away toxins. If you had immediate improvements, those are possibly due to improvement in CSF flow.

I have no idea what you should do!
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Re: Exposure at Work Progressing My Disease Due To BBB & CCS

Postby blossom » Fri Feb 15, 2013 7:34 pm

just curious-were you working there very long before symptoms started and you got the ms diag. or did you start to work there after you got diag. with these symptoms someone decided to name ms?

don't know what chemicals you are exposed to but i doubt any kind are good for you.

nobody has this so called ms thing figured out. we are all different in this sameness. a lot of things can cause these symptoms they call ms and chemical sensitivity or toxicity is one of them for some.

you might want to get a work up on how much of these chemicals are storing in your body. or even a good allergy dr. who may be able to test your body's reaction to them.

good luck in your search for your answer.
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Re: Exposure at Work Progressing My Disease Due To BBB & CCS

Postby Lance1564 » Fri Feb 15, 2013 7:36 pm

CeCe

I've yet to find out if my neurologist agrees with any of the theories behind a permeability issue with the BBB or CCSVI. I have a strong feeling he doesn't. So I've kept that part of my treatment in the hands of the IRs.

Wearing a respirator, which is all that would suffice to prevent exposure, isn't feasible in my job and would be a very long day trying to breathe in that thing. But I clearly remember in the first 2 years, that I would feel better every time I was away from work for more than 3 days. It was automatic. At that time I simply contributed it to more rest. But truthfully, my job was never taxing. I probably did more physical activity on my days off than I did at work. Now that my symptoms are unrelenting, it's harder to see that very clear distinction when I'm working or not. I'm certainly worse when working, but it's hard to tell if it's being on my feet or possibly the exposure. Could be both.

Regarding my procedure: In all honesty, my results were profound. And I went into the procedure very skeptical. But I was desperate like everyone else. As I mentioned, I had an 80% stenosis of the right jugular vein just under the clavicle. Not surprising because it was my left side that had been affected much more greatly than the right. It took about 6 days for me to start seeing results. I felt like I was dreaming. I had more energy than I had experienced in the three years since it all began. The spasticity disappeared, muscle spasms ceased, cog fog lifted and no pain! Unfortunately, these results only lasted 3 weeks.

Over a 3 day period all of my symptoms returned with a vengeance. The 3 weeks of heaven had made me a firm believer in the connection between CCSVI and MS. I was convinced that the vein had restenosed. And indeed, after a venous CT at Vanderbilt last week, the results showed the vein had returned to an 80% stenosis.

Now I'm scheduled to go back for a 2nd procedure on the 25th. This was a tough decision for me to go back so soon. I understand the potential for the vein to go right back to baseline even after a 2nd procedure, particularly considering the fact that I restenosed so quickly. I also realize there is the risk for hyperplasia. But the results were so good. I'm hopeful it may stay open after a second try. The doc I see will not use stents on me. They feel like the chances for occlusion with a stent are high, and they don't feel confident in the long-term efficacy of current venous stents. Plus, I'm only 35. They say I'll long outlast the stent. Their opinion of course.

Sorry to be so long. Nothing smoothe about the decisions we have to make with this disease. Kind of an experimental crapshoot with CCSVI at this point. But I don't mind being a pioneering guinea pig. I KNOW there is some connection.

Thank you for your response to my post!
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Re: Exposure at Work Progressing My Disease Due To BBB & CCS

Postby Lance1564 » Fri Feb 15, 2013 7:47 pm

Blossom-

Thanks for your reply. I have had heavy metal testing ran with normal results. However, I'm not sure they can even test for the things we work around. Many of them are polymers and solvents.

My MRIs have revealed the classic lesions seen in MS along with the symptoms. Whether or not it was the chemical exposure that caused the lesions I simply cannot know. Like you said, "We're all different in this sameness."

But...I've always felt there was a good chance that my exposure to these chemicals contributed to my development of the disease. And it just makes sense to me that if these the smallest amount of these toxins could cross the BBB, they would certainly be quite damaging to neurons.

Either way, I have felt for some time that leaving this place is probably the best choice. It's just a hard thing to do when you have a family to provide for and good jobs are somewhat hard to come by, particularly where we live.
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Re: Exposure at Work Progressing My Disease Due To BBB & CCS

Postby Cece » Sat Feb 16, 2013 7:12 am

Lance1564 wrote:I've yet to find out if my neurologist agrees with any of the theories behind a permeability issue with the BBB or CCSVI. I have a strong feeling he doesn't. So I've kept that part of my treatment in the hands of the IRs.

Well, yes. From personal experience, discussing CCSVI with my neurologist doesn't end well.
But permeability of the BBB is a known thing in MS.
Dysregulation of the BBB and transendo thelial migration of activated leukocytes are among the earliest cerebrovascular abnormalities seen in multiple sclerosis (MS) brains and parallel the release of inflammatory cytokines/chemokines. Mechanisms for breakdown of the BBB in MS are incompletely understood, but appear to involve direct effects of these cytokines/chemokines on endothelial regulation of BBB components, as well as indirect cytokine/chemokine-dependent leukocyte mediated injury.
http://msj.sagepub.com/content/9/6/540.short

Regarding my procedure: In all honesty, my results were profound.

Whew. That's the best possible outcome except for the part where it went away.
Is your IR experienced in CCSVI? Do you know how many patients he has done?
Sometimes during a second procedure, the IR balloons more aggressively, since it didn't last the first time. If the vein was underdilatated the first time, then more aggressively is good. But if it leads to vein injury, then it is very bad.
Also with only one stenosis being found, it is possible that another one was missed. I wish we had data on this. How often, when a thorough examination of a pwMS is done including the left renal vein, is there only one stenosis found?
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Re: Exposure at Work Progressing My Disease Due To BBB & CCS

Postby Lance1564 » Sat Feb 16, 2013 9:23 am

The only stenosis found by the doctor was of the right jugular. However, as you stated, it's always possible that they missed another stenosis. It is about three to four doctors in the IR department that are treating the condition under the Chief. It's a well-known medical center in the south where this is being done. Of course, they are not part of the first bunch in the U.S. that began treating. My understanding is they have about 80 procedures under their belt so far. Not that great I know but not terrible either.

I've debated going to Chicago for my second procedure to see one of the docs that's been doing this for quite some time now. I'm sure you know the doc. He might see something the docs down south did not. I just got worried about insurance throwing up a flag with me jumping around. And they obviously know how to properly code the procedure where I'm currently scheduled as the second procedure is already approved by insurance.
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Re: Exposure at Work Progressing My Disease Due To BBB & CCS

Postby blossom » Sun Feb 17, 2013 12:16 am

lance, with you having such great results even though short lived i can understand you wanting to try again. everyone makes their own choice.

being you are exposed to chemicals daily and some can effect the veins and the nervous system is there any way you can get a better look into this? if by any chance it is part of the problem it could be one of the reasons you restenose quickly. and besides throwing good money after bad if that's the case i'd think you would be more at risk of doing irreversable damage to the veins. again, only my thoughts--the ball is in your corner. the best to you whatever you do.
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Re: Exposure at Work Progressing My Disease Due To BBB & CCS

Postby Cece » Sun Feb 17, 2013 12:45 pm

I know of two well known docs in Chicago! (Dr. Hector Ferral and Dr. Arslan).
It is about three to four doctors in the IR department that are treating the condition under the Chief. It's a well-known medical center in the south where this is being done.

That sounds good. This is at a hospital, not a clinic? We need academic hospitals to get involved so there can be write-ups in the medical literature. It's encouraging too that the entire department is involved.

Hospitals are also likely to have intravascular ultrasound already available. It might be something to ask about, and to make sure they've read what research there is on IVUS use in CCSVI. Not all doctors use IVUS, but the ones who do seem very convinced about it.

Let us know how it goes on the 25th. I'm rereading what you said about them not wanting to use stents which seems very wise. Stents are rarely used in CCSVI although they were more common back in 2009 and 2010 before all the problems with them manifested.
This was a tough decision for me to go back so soon. I understand the potential for the vein to go right back to baseline even after a 2nd procedure, particularly considering the fact that I restenosed so quickly.

Do you have images from the procedure? Are you able to tell from the final image if the vein is opened up completely, or if it appears that there was residual stenosis in the final image? The quick restenosis could be more easily explained if the vein was not opened up completely. Quick restenosis or loss of improvements can also be due to clotting, but the venous CT scan would have ruled that out.
As I mentioned, I had an 80% stenosis of the right jugular vein just under the clavicle.

The good news is that under or near the clavicle is the common location for jugular valve stenosis, which is what's very commonly seen in CCSVI. If you'd been posting that your jugular stenosis was up near the skull base, that would not have been good (since that is not a common area, and could be reflective of your IR potentially being inexperienced, and is an area that can easily lead to vein injury and occlusion).

I am not a doctor and none of this is meant as medical advice. :)
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Re: Exposure at Work Progressing My Disease Due To BBB & CCS

Postby MrSuccess » Sun Feb 17, 2013 1:48 pm

MS has been around for 150 years. Longer than most of the current chemicals we are exposed to daily. I am more concerned with CRAB drugs than stuff floating around outside of your body.

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Re: Exposure at Work Progressing My Disease Due To BBB & CCS

Postby Lance1564 » Sun Feb 17, 2013 5:28 pm

MrSuccess-

I would agree with you about the CRAB drugs. And you're correct about MS being around 150 years, but that really has nothing to do about the effects of neurotoxic chemicals on neurodegenerative disease. The problem with the stuff 'floating around outside my body' is that these agents end up inside my body. I had a recent email exchange with a neurotoxicologist at Vandy who readily admitted that chronic exposure to organic solvents and other agents could potentially cause or hasten MS disease progression. I get the feeling that any agent (virus, bacteria, iron, organic solvent, etc.) would damage neurons if they're able to cross the BBB.
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Re: Exposure at Work Progressing My Disease Due To BBB & CCS

Postby Lance1564 » Sun Feb 17, 2013 5:37 pm

Cece-

You are a great help!

To answer your questions:

1) Yes, this is at a university hospital, not a clinic.

2) I got a copy of the procedure images before I left. The vein looked to be opened completely. Of course, this is coming from a laboratory technician. ;)

I will ask them this week if they use or have considered using IVUS
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Re: Exposure at Work Progressing My Disease Due To BBB & CCS

Postby Cece » Sun Feb 17, 2013 8:07 pm

I get the feeling that any agent (virus, bacteria, iron, organic solvent, etc.) would damage neurons if they're able to cross the BBB.
Yeah, I think so too. The capillary endothelial cell junctions in the BBB are ten times tighter than what normal capillary junctions are elsewhere in the body. It's made that way for a reason! If it was ok for everything to pass freely into our brains, we wouldn't have those extra tight junctions.
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Re: Exposure at Work Progressing My Disease Due To BBB & CCS

Postby HappyPoet » Sun Feb 17, 2013 8:14 pm

Hi Lance and welcome,

Regarding CCSVI, please see this study that shows both IVUS and catheter venography are required for proper diagnosis. According to this link, Dr. Ferral uses IVUS, but Dr. Arslan isn't listed.

Regarding chemicals you work with, your primary doctor or a medical toxicologist can use SDSs (see below) to determine what tests should be run. Although your neuro should be interested in this pursuit, he or she might not be open to anything that could rock the boat regarding DMDs and the unproven theory of autoimmunity.

OSHA Hazard Communication Safety Data Sheet (SDS) Quick Card.
Section 8, Exposure controls/personal protection lists OSHA's Permissible Exposure Limits (PELs); Threshold Limit Values (TLVs); appropriate engineering controls; personal protective equipment (PPE).
Section 11, Toxicological information includes routes of exposure; related symptoms, acute and chronic effects; numerical measures of toxicity.
Employers must ensure that SDSs are readily accessible to employees.
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Re: Exposure at Work Progressing My Disease Due To BBB & CCS

Postby MrSuccess » Sun Feb 17, 2013 10:04 pm

Lance , I'm just as concerned about what we are breathing and exposed to as the next guy ... I'm just saying .... MS came BEFORE all these chemical inventions.

People are living longer lives than ever before . A great many are celebrating 100 years of life. And yet our lives are exposed to all of those things mentioned.

It is indeed ......... a puzzle.


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