Quixotic1 and others

[needanswers54]

Okay, this is really long, for which I apologize beforehand.  I will have to send this in two or more questions as I tend to be so wordy.

I worked in a medical and laboratory setting for approximately twenty years.  I have had several unnecessary exposures due to the carelessness or ineptness of others.  I am still to this day in court trying to get information as to what I was exposed to.  Evidently, in the United States once you request this information of your employer they can find some reasons to lay you off and then you are no longer covered under OSHA (no matter that you received safety commendations and was getting promoted.)  Bull##$%!  Plus, after three years the information can be destroyed.  So, how could anybody trace certain diseases and do true epidemiological studies without this information?  If there are certain environmental causes we may delayed in there discovery.  We pretty much all know that some diseases do not show up for many years and that certain chemicals/drugs/radiation can cause problems even with offspring and molecular changes.  Look at the effects of Agent Orange and diesthystilbesterol (spelling?) and others.  It took many years for problems to be connected to the exposures.  So, whether there if any benefit to me or not, I feel that I MUST PURSUE this if for nothing else other than to set precedent for other researchers, health care workers, chemists, rapid-responders, clean-up people, construction and maintenance workers, etcetera or anyone that could conceivably come into contact with hazards without being able to get their information.  This could also include work-related vaccinations, etc.  The reason that the OSHA regulations do not extend after someone is no longer employed with an employer is because the OSHA regulations are for right-to-know for the EMPLOYEE and the regulations have never been stated to include former or dead? employees or others.  As I stated above, certain exposures or medications can even affect other people.  This really p%&##*#sme off as my former well-noted neurologist sent a letter to the court requesting my possible chemical exposure information.  I had also requested it verbally and in writing prior to being laid-off.  My neuroopth says no causation can be made without knowledge.  (No lawyer can effectively represent the case with a more definitive causation.)  Another doctor (and former researcher) wrote a letter to the court stating that as near as he can tell that this may be employment related.  He even stated the medical need for my exposure for the court's record.  Evidently this is not good enough.  And now the neuroradiologist says that it could be important.  My new neurologist says that people do not realize that chemical exposure, even airborne, is just like taking medications or chemicals internally.  It is so unbelievable!  Not even my representative and senators nor the state commissioners (who are supposed to oversee that the OSHA laws are upheld) have been of any help.

(more to follow)

[Quixotic1]

The suggestion that you forgo meds and treat PRN is ignorant and harmful.  The MS drugs are available to many essentially free.  If this is MS and it does sound like it, the research shows that the disease damage progresses whether or not there are symptoms.

My reading into the search for the triggers suggests that the most likely trigger, in addition to a genetic and lattitudinal susceptiblity is a viral trigger, most likely Epstein Barr Virus.  That is where the data is most convincing, largest and growing with each new study.  Less convincing evidence is in for Human Herpes Virus #6 and for Chlamydia pneumoniae.  As far as environmental toxins - our entire world has become toxic and it wouldn't surprise me to find such an additional factor.  None have shown promise to date. \

There is also evidence that variations in people's immune responses to common infections may either play a role or be a part of the susceptibility to MS.  A larger number of MSers suffered the typical childhood infections, including things like Roseola (HHV#6), EBV (me included), and Parvo B19 (me again) later in life than most people, ie, their teens or twenties.

I have Social Security Disability and after two year you qualify for Medicare.  The drugs are covered by Medicare, but there is that "donut hole" which requires between $3,000 and $4,000 out of pocket each year.  But, each drug company has programs that make the drugs available to paople whose resources are truly limited.  In some cases they are free.  You do yourself a huge disservice not to investigate these.

I understand the anger and obsession that knowing that a powerful entity has done harm and will probably get a way with it.  My ExH got into a huge disability thing with IBM more than 20 years ago - and we found our phones tapped, both at home and at work.  But, I no longer have the energy to expend on it.  Just my votes and my voice.  I chose my nickname here for a reason.

There is not going to be found one "single" cause of MS, that is clear to me.  The causes will likely be an unfortunate combination of several factors., with viral infection most probably leading the way.

Quix

[essdipity]

I can't possibly comment on your symptoms and their causes. You know much more about this than I do.

One thing I CAN say though, is that you should not go without meds because you can't afford them. If you are on disability, do you have Medicare Part D (drug coverage)?

And are you familiar with the public/private partnership that Montel Williams talks about on TV spots? I"m sure his Web site has a lot of info on how to get help with money for meds you can't afford otherwise. And he has MS, so he knows how much these meds cost.

Please look into all of this. You may not have family to support you, but you have this forum. We care, and will do our best to help.

ess

[needanswers54]

Yes, I was just diagnosed with MS by my new neuro and told to come back in a year.  He suggested that since my monies were spent that I do not take the new MS drugs.   Also, he said that I have done so well treating my symptoms prn that he thinks that I should just do that...but said he is leaving it up to me and will refer me to the MS center which MIGHT see me next year.  He said that they will want to do more testing and he will leave that up to me to call the shots on the pain, expense, etc.  I called the hospital and asked that a neuroradiologist read my films.  She told me atypical MS and/or recurrent ADEM with transverse myelitis.  Told me possibility it could have been caused by toxic exposure, but would need to know the chemicals.  Told her I could not find out. I told a top attorney about 1995 that three or four docs agree that I had problems and (oops, there goes the shooting comets in my vision---prettty) that my PCP thought probably MS.  He told me to forget about Worker's Compensation then and just learn to live with it and pay my bills.  Easy for him to say when my medical care and drugs I take now (without the cost of the MS drugs) is as much as my total disability and all my resources are spent (including my retirement and life insurance).  And I have no family to support me financially or emotionally.  
Attorneys told me that it is all genetic....and I do not believe that to be true.  I believe the propensity might be...But every study I reads says that there HAS TO BE AN ENVIRONMENTAL TRIGGER.  Even an identical twin only has a 30% chance of getting MS if their twin has it.  That means THE ODDS ARE THAT A PERSON WILL NOT GET MS even if a relative has it.  Noone in my family on either side had any autoimmune disease.  And with the temperate climate factors I believe there are other things at play.  Just because it is epidemiologically cloistered does not necessarily indicate genetics.  It can indicate infection or some environmental trigger at play (and possibly a genetic susceptibility).  But, even in the most statistically highest populated area of MS MOST PEOPLE DO NOT HAVE THE DISEASE.  I was trying to link the cortical spreading depression such as in migraines, strokes and trauma with the increased MMP9 factors which research correlates with central nervous system fluid leakage, swelling, and BBB breach.  Also, at least one specific area of the brain is believed to be susceptible to BBB integrity breach and a single lesion there has been shown to cause migraines with aura:  which is in turn recently linked to cortical spreading depression (CSD) and now increasing MMP9.  It becomes like a vicious circle.  As environmental agents have been shown to cross our protective barriers easier with inflammation, I thought that perhaps the increase in my migraine problems and my new neurological symptoms could be related to a BBB breach and lesion formation from the chronic and acute toxic exposures as it is thought that MMP9 increase and subsequent swelling and inflammation can occur within thirty minutes (per recent research) and the exposure periods were much greater than that and chronic.  (I will continue into another post or two, sorry.)

[Quixotic1]

You're in a difficult legal fight.  I, too, believe and KNOW that employees are exposed to things and that the fact is covered up.  I am a believer in the conspiracies that those with money and power engage in to keep what they have.  But, I also feel that most of our "regulatory" agencies are held back or compromised.  My energy is limited, so I chose to spend it here trying to help where I can.  My days of fighting the big corporations have passed, but I am with you in spirit.  I empathize with your anger.  Good luck.

Quix

[tarapags1107]

wow..... that is very interesting.  So you don't know what you were exposed to and have now way of figuring it out?   Have you been diagnosed with any neurological problems/MS since the exposure?  I cannot even fathom that a facillity could deny you access to information that could potentially help your neurologist in making your diagnosis.