managing... well everything

Yesterday was, well, interesting.  Drove the hour plus to Omaha, the 'big city' nearest to us, to make it there by 9:15 am so we could check in.  First off, I definitely have one of the best husbands out there, as he took the day off work so I didn't have to try and get Cody in the car, get through traffic, and go to my Dr.'s appointment by myself - and I remember that on days like today when he is rushing off to work in such a hurry that he barely says goodbye.  Traffic was the usual down town morning craziness, but we made it by 9... only to find out that the directions they sent ended in the middle of the Medical Center, with no mention of which building we were going to.  Hmm, who would have thought that that pertinent information was located on the SECOND page of the letter telling us what to bring to the appointment and not of the driving directions.  We managed to make it there only 20 minutes late... which of course meant that we had to reschedule for later.

We got lucky, after being a smidge grumpy about the confusion over the directions and that my hubby had taken the day off work to run Cody and me to the med center.   They were able to work me into an afternoon appointment.  SO, what to do for four hours in Omaha with a baby?  Well, I was planning on meeting a new friend that I'd made on Face Book face to face after the appointment, but before and having lunch with her worked out just fine.  Had a nice lunch and good conversation, and got back to the hospital just in time to get signed in and feed the baby in the waiting room - how often do you do that?!  Interesting to say the least.

I'd gone hoping the neurologist would refer me to a vascular surgeon so I could get checked out for CCSVI.  No such luck, but had a really good discussion with her about everything ms, and the latest news.  Kind of disappointing b/c she down played my grandma's recovery as having probably happened if she hadn't changed her diet all around.  CCSVI is still not PROVEN, so you aren't going to get any doctor on the band wagon with you regarding that, but she did point out 2 universities doing studies, in Alabama and at Buffalo, NY, and said that if I was still feeling strongly, to get in a study, rather than go to someone w/out any background in the phenominon.

We also talked about Lyme disease.  She has treated patients with Lyme before, and said that even if I would turn out to have Lyme, I'd treat each separately, the ms and the Lyme.  The key thing was, regarding Lyme, that if I did get a false negative on my western blot test, I wouldn't be getting better taking the current ms drug I'm on (Tysabri).

She made me feel a lot better about being on the Tysabri, with it's PML risk, and said that I am doing the thing she'd have me do if I were a patient of her's with being on the study that's checking Tysabri patients once a year for JC Virus antibodies.  She also said I should be getting my vitamin D levels checked every year.  All in all, I'm confident in my ms specialist/ PhD/APRN and I'll continue seeing her.

On the way back, we got chicken feed from the elevator we moved away from... always liked their stuff better and our chickens always layed better with it.  THEN, panic, we remembered that we had to pick the old mare up from the surgery she'd had that morning!  Here's a current picture of the old girl - she's 23.

She's still skinny, but she's looking better and better all the time... here's what she looked like when she came down this winter:

The reason she's so skinny, is because she's missing a lot of her teeth - 5 have came out of her mouth since I met her 5 years ago... some while the vet floated her teeth!

She can't chew hat or grass, she just balls it up for the most part and it falls out of her mouth.  That's why she was so skinny, she'd been treated like my husband's parents had always treated her - round bale of hay and oats and corn if she needed them.  Now, she eats pelleted alfalfa and Netrena Safe Choice pellets because they dissolve in her mouth.  She was eating Senior feed, either Nutrena or Purina, but they have gotten unbelievably expensive!  Firecracker has been with my husband since she was about six weeks old, bought off her mother (who had sold and the buyer d/n want the foal) at an auction.  He's done all the training on her and has been about the only one to have ridden her, so she's kind of his baby.  She's been breaking out in an abscess about once every winter for the past we don't know how many years.  After Nate and I had gotten married, I'd taken her to my vet to find out why, and he said that she happened to have an abscessed tooth, and that that could possibly have been breaking out her jaw.  He removed that tooth, but that wasn't the cause of the jaw abscessing, b/c it came back about once a year after that.  Now that she's back with us, and being a little more closely watched, I got the vet down here working on why she'd been abscessing.  Bone sequestrum, a piece of dead bone that has become separated during the process of necrosis from normal/sound bone.  It is a complication (sequela) of osteomyelitis. At any rate, I'd taken her, with my Clue for his yearly dental float, the day before - by myself, with Cody.  Firecracker had been operated on sucessfully that morning, and we had to run down, nearly an hour in the opposite direction, to pick her up.

Whew, what a day, 7 month old in tow, MS appointment for me for a second opinion on my treatment, feed for chickens, and mare picked up from the veterinarian's after her surgery... and the funny thing is, it just seems like a normal day now, writing about it. lol


 

"Big Pharma Behaving Badly" and why I dislike the NMSS

Big Pharma Behaving Badly (And Making Me Want to Vomit)

Shared off Wheelchair Kamikaze.   Funny that my first neuro put me on Rebif right away, and that I reacted to it poorly and had more lesions. I don't trust any of them. Makes you wonder if CCSVI tests and treatment aren't covered under insurance b/c the insurance companies are paid off by the drug companies!  Now, I'm not a total conspiracy freak, but you have to wonder how much of this goes on when things like this break out.

Always and forever will hate the Nat'l MS Society's slogan 'MS stops people from moving.'!  And if my ms suddenly paralyzes me... I am blaming them for putting that idea into my head.  DEPRESSION is what CAN stop people from moving, and not work to combat their ms!!

I just shared my grandmother's story of being 'bed ridden, blind and incontinent', as my dad explains it,  back in the 60's.  She  (mainly her sister) found a regimen that helped her recover from her ms - before drugs that 'modified the disease', and I knew her as a grandma who, like many others, used a cane and sometimes a walker.  Recover, not get 'paralized' and die, RECOVER - before all the new 'disease modifying' treatments.  Her story can be found on scribd.com.

I, personally, can tell a major difference in my abilities from day to day, depending on what state of mind I'm in.  I just had a baby, and was pretty much confined to a chair during the last trimester and the first few months after he was born.  I started physical therapy and am already, 6 months later, back to where I was before the pregnancy, mobility wise... and am even getting to where I can move him around using a stroller and not only the chair - AND, I was discharged today and declared 'no longer home bound'.  MS CAN be combated if you learn and do what your body needs!  I know that when my job fired me for asking for accommodations to be able to stay healthy and productive working their BS schedule, depression nearly got the better of me.  Aside from telling patients they're 'doomed', the slogan feeds into the already negative misconceptions of MS that helped give reason for my job to dismiss me.  Though, I should add that I have thought of the possibility that the MS diagnosis was just a good reason for them to get rid of me, and that they didn't like having a free thinker who might challenge the status quo, or at least question it.

Having MS does NOT mean your body WILL stop moving, as the NMSS likes to claim.  I called and complained directly to the organization, and was told that 'MS stops people from moving.' just 'fits' with their 'Join the movement' campaign.  My PT who's been visiting me out here usually deals with the geriatric, rather than MS, but she has seen some MS patients over the years, and I went off on her today about the NMSS after she discharged me, while I printed Grandma's letter off for her, and she agrees that telling people their disease will immobilize them will only cause depression and most likely take away all reason to strive to improve. 

Off the NMSS home page:

The National MS Society is a collective of passionate individuals who want to do something about MS now—to move together toward a world free of multiple sclerosis. MS stops people from moving. We exist to make sure it doesn't.
We help each person address the challenges of living with MS through our 50-state network of chapters. The Society helps people affected by MS by funding cutting-edge research, driving change through advocacy, facilitating professional education, and providing programs and services that help people with MS and their families move their lives forward.

• We are moving research forward by relentlessly pursuing prevention, treatment and cure.
• We are moving to reach out and respond to individuals, families and communities living with multiple sclerosis.
• We are moving politicians and legislation to champion the needs of people with MS through activism, advocacy and influence.
• We are moving to mobilize the millions of people who want to do something about MS now.

How the heck does the society 'make sure MS doesn't stop people from moving'?!  All I've seen from them, is that they educate.  Which they do do well, but I have to wonder also if what they put out isn't just support of the 'Big Pharma' companies' prerogative.  Back when I was first diagnosed, I knew of Grandma's recovery and was(am) on a yahoo group of people with MS (MSers) who are very anti conventional meds and swear by diet and supplements.  I called the NMSS, asking about if there was any specific research into any of this, and if there wasn't, if they would find someone and fund them in finding scientific evidence of legitimate nutritional treatments for MS.  I was practically laughed at and told it'd 'never happen, there's no money in that line of thinking.'

And THAT is why I get a little 'prickly' when the Nat'l MS Society is mentioned.

Where ms comes from and how to get over it

I don't know the answer to either of those things, but I do have some leads.  MS drives me crazy, and the doctors, and the drugs.  MS, 'Multiple Sclerosis'... literally 'Many Scars'.  What the heck?!  The doctor and the drug companies figure they can treat my 'scars'?  Whatever.  What I have learned in life is that scars can't be healed, they are the healing of damage that has occurred, I can look at my arms and hands and see that -  these now small scars are what is left of a run in with a barb wire fence a couple years ago (look at the lower left hand corner and a still red mark in my hand in the lower right).

So,  why don't I hear about them finding out WHY ms patient's brains and spinal cords have scars?  Because they don't know why.  My grandmother's recovery from the throws of ms prompted me to write about this today.  At the end of this, I am going to attach a letter she had written about her experience with ms and how she recovered from it.  Recovered you say, got back what she'd lost anyway.  When I knew her I would have never guessed she had ms, she was just another old woman with a walker, and my grandmother.  Dad told me she was bedridden, blind and incontinent in the '60s.  I know you can recover from ms, because I feel that that is what I have been doing with my PT, and I need to do more of the diet stuff that she outlined in her letter.

They THINK it's an auto immune disease, so the current 'main stream' (doctor recommended) treatments suppress the immune system... I liked this site that came up when I googled my question for explaining ms: http://neurology.ucsf.edu/msc/faq.htm

I also like About.com:

Causes of Multiple Sclerosis:

No one knows what causes multiple sclerosis (MS). Four main theories have emerged to attempt to explain MS. Each of these theories can explain a piece of the MS puzzle, but none explain everything. It is likely that the cause of MS is a complicated interaction of these four theories: the immune system, the environment, infectious diseases and genetics.

Though no one knows why, most researchers agree that multiple sclerosis (MS) is caused by the immune system attacking the body. Specifically, the immune system’s T-cells attack cells in the brain and spinal cord, damaging the outer sheath (myelin) of nerves. The damage impacts how well those nerves function – the source of MS symptoms and disability. The disease-modifying treatments work by using different mechanisms to prevent the body’s immune system from attacking the nervous system. 
Okay, how do they know it's the immune system attacking the nerves...?

Environmental:

People in certain regions and areas have a higher risk for MS than others. By studying people who move from one area to another, researchers have learned that individual risk changes based on location. They have concluded that some exposure in the environment increases the risk for MS.
MS occurs more in places farther from the equator. Some researchers to believe that vitamin D may be involved in MS. Vitamin D is produced by the body when the skin is exposed to sunlight. In regions far from the equator, the atmosphere filters out more of the sun’s rays which decreases vitamin D production in the body. 
Sure, I was born in SD and spent most of my life there and in MN...

Infection:

Viruses are known to cause damage similar to that seen in MS. Some researchers believe that infections may somehow trigger the immune system to attack nerve cells. Basically, the virus (or bacteria) that causes an initial infection “looks” like a nerve cell. The immune system develops T-cells to fight off the virus. Those T-cells remain in your body after the infection is gone and become confused when they “see” a nerve cell, mistaking it for an invader. The result is that your immune system attacks your nervous system. 
Possibly...

Genetic:

A person’s chances of developing MS increase if he or she has a relative with MS. Researchers believe that certain genetic combinations increase the likelihood of a person to develop MS. However the increase in risk is not high enough to call MS a “genetic disease.” Instead, it seems that genes are one factor, among many, that determine a person’s risk for MS. Your chances of developing MS are:

• 1 in 1000 if you have no relatives with MS
• 1 in 100 if you have a second-degree relative (grandparent, aunt, uncle, etc.) with MS
• 1 in 40 if you have a parent or sibling with MS
• 1 in 4 if your identical twin has MS 

Yep, my grandmother had ms.

Not found in a basic search is the veins and circulatory system being involved, or CCSVI.  CCVSI.org defines CCSVI as "“Chronic Cerebrospinal Venous Insufficiency,” a condition where people have obstructed blood flow in the veins that drain the central nervous system (the brain and spinal cord). Research indicates that CCSVI is significantly correlated with multiple sclerosis."  A 2009 article in Nutrion & Life say that

Research is suggesting that blocked veins in the neck prevent blood from draining from the head triggering plaque formations that cause MS.

Multiple Sclerosis is a neurological, progressive disease where the insulating myelin sheaths that protect the brain and spinal cord are damaged, resulting in poor nerve conduction and messaging. Symptoms and disability vary significantly depending upon which parts of the brain and spinal cord are affected as well as the stage of the disease, but eventually sufferers develop cognitive as well as physical symptoms, including decreasing ability to walk, move and see. MS tends to strike young people more frequently than older, and women 2 to 3 times more frequently than men. MS has always been considered an auto-immune disease, where the body attacks itself, but why this happens has not been understood.
Well, Dr. Paolo Zamboni, a physician in Ferrara Italy, may have figured it out. His wife suffered from MS, and after treating her 4 years ago, she has not had another acute attack, and her MS symptoms are gone. Furthermore, he has treated a total of 118 MS patients since then, and 100% of them had dramatic improvements in their symptoms.
What Dr. Zamboni discovered was that all the MS patients that he examined via Doppler ultrasound had blockages in the veins in the neck that drain the brain or in the azygos vein in the thorax. When he looked at people that did not have MS, both healthy as well as those that suffered from neurological problems other than MS, none of them had vein blockages. When he used angioplasty to unblock the veins, right away after surgery his MS patients noticed differences in how they felt. Two years post surgery, 100% of those that did not have re-narrowing of the veins had no MS relapses. If there was a relapse, a re-narrowing of the veins was found. So it appears that narrowing veins are directly linked to the progression of the disease.
Veins are the pipes that return de-oxygenated blood to the lungs and heart. Veins are not pressurized by the heart pumping to keep them open like arteries are (arteries carry oxygenated blood to the brain and body), so veins will collapse with external pressure. If a major vein like the jugular vein in the neck is narrowed or closed and the blood cannot drain properly from the head, a back-flow problem can develop, where the venous blood is actually going the wrong way. So a situation develops where blood is being pumped into the head, but has trouble getting out, pressure builds in the veins inside the brain, forcing the blood into the gray matter, creating damage.
If venous drainage is poor, iron accumulates in the brain causing cells to die, inflammation, immune problems, and the plaque lesions known to be found in those with MS. Dr. Zamboni found in post mortem studies of MS patients that the plaque lesions in the brain all had a vein at its center. And interestingly enough, the plaque lesions developed on the opposite side to the normal flow direction, suggesting that the blood was actually flowing the wrong way.
It is hypothesised that the inability to drain blood causes inflammation, excess iron deposition in the brain causing free radicals which kill cells, damaging the blood-brain barrier, and causing plaque lesions possibly triggering the auto-immune response in MS. For this reason, if this hypothesis is correct, it is vital that MS patients get their veins screened and cleared as early as possible after their diagnosis, so that plaque damage can be minimized.
However, this is still a very new idea, and many physicians either have not heard about this theory, or are not yet convinced that poor brain drainage may be the trigger for MS, so patients that want this treatment are having difficulty finding physicians that will do it.

Full article: Are vein blockages the trigger for Multiple Sclerosis? | Trusted.MD Network http://trusted.md/blog/vreni_gurd/2009/12/06/are_vein_blockages_the_trigger_for_multiple_sclerosis#ixzz1LQBD4VTe
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Research they are doing, and have found a definite correlation, but the doctors, mine anyway, want definitive proof before they'll send people for the treatment - Liberation Treatment.  So, many people are going to the coast, namely CA and FL, to get tested and have the procedure, and paying out of pocket.  What I have seen on Face Book looks promising, but those are the ones who have done it and it has helped.  I've yet to see the statistics on how many the Liberation Treatment has relieved of their ms symptoms.

Stem cells have also been used,  but I do not know to what amount and sucess.  I'm definitely hearing less of them than I did a few years ago.

Now to grandma, and a test of my computer skills in trying to share the 10 pages that I scanned... I don't know how to easily link this, so I will just put the letter here... which I can't figure out either, so more learning to do on my part, and I will share my grandma's regimen for getting over ms at another time.