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Multiple sclerosis is a progressive, disabling, neurological illness that affects the brain and spinal
cord. Nerve cells normally are surrounded by an insulating sheath made of a fatty substance called myelin that helps to transmit
nerve impulses. In MS, this myelin sheath is inflamed or damaged, which disrupts or slows nerve impulses and leaves areas
of scarring called sclerosis. These areas of myelin damage and scarring are called MS plaques.
The disruption of nerve signals causes a variety of symptoms that can affect vision, sensation and body movements.
These symptoms usually come and go through a series of episodes when symptoms suddenly get worse (called relapses) alternating
with periods of recovery when symptoms improve (called remissions). Many patients have a long history of MS attacks over several
decades. In these cases, the disease may worsen in "steps," when the attacks occur. For others, the disease progresses steadily.
In a minority of patients, MS causes relatively few problems.
Although the exact cause of MS has been debated for decades, scientists now believe it is an autoimmune disease,
which means the immune system mistakenly attacks its own body, in this case the myelin sheaths of the nerves. In some cases,
the trigger for an MS attack seems to be a viral infection, but at other times, other physical or emotional stress is blamed.
As a rule, the timing, duration and damage of MS attacks is unpredictable.
Most medical journals and the MS society itself estimated there are 500,000 people in the US with MS, but after
watching Larry King the other night, it was said that the Montel Williams MS foundation had a gallup poll done that puts the
numbers as high as one million. Some reasons given are misdiagnosis and underdiagnosis.
Medications currently prescribed for MS. All with the
hope of lessening exacerbations and lessening lesions.
Avonex-injected once a week-common side effects-flulike symptoms.
Betaseron-injected onder the skin every other day-common side effects-flu
like symptoms
Copaxone-injected under the skin once a day
Novatrone-given intravenously once every three months. Side effects may
include nausea, temporary hair loss and menstrual disorders.
Tysabri-the newest of the MS drugs given intravenously every four weeks.
Side effects may include headache, fatigue, urinary tract infection, lower respiratory infection, depression and joint pain.
Tysabri has been taken off the market due to two deaths, and serious health effects
in a third person. The FDA is considering putting it back on the market with warnings which I feel is a mistake that
more studies need to be done before they even consider this.
There are other non conventional treatments that people have tried and
continue to including but not limited to bee venom therapy and goat serum.
As for me. I want to try low dose naltrexone, which is taken in pill form
once every night. The most common side effects are trouble sleeping and cramping, but this usually goes away within a few
weeks.
The problem is LDN is not approved by the FDA for the treatment of MS, in
much higher dosages is approved for drug and alchohol dependents., and many neurologists and doctors including mine refuse
to prescibe it. But I am going to see if my general practitioner will.
The links below will bring you to sites with good information and support
Click here to go to the National Multiple Sclerosis Society to get the most recent information concerning symptoms, treatments
and much more.
Here is an excellent MS support site
MS terms explained
Have some exciting news!
I recently read an article in the paper about a nearby clinic that does
hippotherapy which is therapeutic horsebackriding. I brought it up to my neuro and he was all for it.
Hippotherapy and therapeutic horseback riding are activities often used along with physical therapy. Hippotherapy
and therapeutic horseback riding are very popular techniques for the pediatric population but have become more popular with
adult neurological populations, such as MS. Hippotherapy is felt to be beneficial for improving balance, spasticity and other
movement dysfunctions. Individuals with MS report significant physical and psychological benefit with hippotherapy and therapeutic
horseback riding. The majority of the studies have been done with children with cerebral palsy, but many of the same benefits
may be seen for people with MS.
I've only gone once so far, but it was wonderful. I was nervous not having been on a horse in ages, but
with the support of my mom and the wonderful staff my fears were greatly eased.
I was so concerned about my balance and feeling sick to my stomach, but once I was on the horse it was truly
amazing. I haven't felt that good in so long. It reminds me of in the movie Forest Gump when Forest says to his Lt. friend
"You have magic legs"
Of course my hands were "glued to the horn" at first but after only a few minutes I was so relaxed.
I would recommend hippotherapy for anyone!!! Can't wait to go again, depends on the weather.
Recieved a definite MS diagnosis from consulting neuologist 9/04. I didn't want to fill this page with a
list of symptoms etc. For there are many sites that list them all. I think I've visited pretty much all of them, and knew
I had MS long before my neurologist said to me when viewing my last brain MRI, this is an MS lesion.
For many years
I had physical problems, while walking I'd drift off to the right, but then after a week or month, hmmm, I was alright for
a while. Allready being treated for anxiety, my primary care dr. said its anxiety. Then in 1999 while at a resturant my arm
went numb for about an hour. Being made to feel like a hypochondriac for so long, and though it scared me, I too brushed it
off as anxiety.
The next day my Mom was visiting and suddenly the vision in my right eye was strange, sort of like
looking through a rainbow. Went to my dr. who sent me to a neuro who said Migraine phenomena. I disagreed with his diagnosis
but figured he knew what he was talking about, he's the specialist.
While serving lunch in the school cafetaria, my
legs would feel like cement, felt like I was falling through the floor. Then in Oct. 2000 my legs kept getting weaker and
weaker, and at my nieces birthday party, I knew my legs couldn't hold me and slid down the wall to the floor. I was so dam
scared and sat there crying. I was thinking the others there must think I'm really a nut. After a half hour I was able to
stand with help. My dr. sent me for an MRI to rule out MS or Guillian Barre. The MRI said either vascular disease or possible
demylentiating disease. After lots of blood work the neuro didnt' feel there was anything wrong.
After a car accident
where my back and neck where sprained, I went to therapy and my neck felt better but my back hurts continously and the dr.
said it always will due to dessicated discs.
During the months following my accident along with the pain, I was getting
tingling in my legs. The dr. said there was no reason from my back MRI that this should be happening, said I was under too
much stress. I was again sent to the same neuro who I saw in 1999 and he said my neuro exam was perfectly normal and wrote
in his report that I was being manipulative and trying to get disability, which I wasn't!!!! I had brough the car insurance
form that he had to fill out for payment.
I've seen many drs and most of my symptoms except for the back pain where
put off to anxiety. When I first saw my current neuro a couple years ago, I went in with hope of getting help, for he was
highly recommeded and I knew my health was declining. By this time I was off balance alot more, weak legs, tingling and developed
a jumpy muscle in my left foot. The neuro said I was fine, and said he was going to prescribe Paxil for depression.
This
truly was the lowest point in my years of being undiagnosed. I told my Mom I wanted to die and to take care of my youngest
son for me. I couldn't handle being told my symptoms were in my head one more time, when I knew my body was failing me.
My
brother who is an RN and worked at a psychriatric hospital came over and talked to me. I realized I could not leave my children,
my parents and siblings, I loved them too much.
So months go by with continuing and new symptoms, the newest being
having to pee up to 20 times a day, and getting up a couple times at night. I was sent to a urologist who had a urodynamics
test done and found i'm retaining way too much urine. My first thought was hmmm, didnt I read this on many of the MS sites.
But I waited to see my neuro and casually mentioned it to him, he ordered another brain MRI.
I can't remember the
exact wording of the report but it goes something like this, there are several areas of white matter changes in the periventriclar
area that can be consisent with a history of multiple sclerosis.
The lesions did not change since the MRI 10 months
before, just someone else read them. My neuro asked to see the actual films from all the MRI's and that's when he said, "This
is an MS lesion" pointing at one in particular. I did mention to him about my hand tremors, another new symptom, and while
he was checking my eyes he said I had a head tremor, I thought he was kidding, he wasn't.
I really don't remember
too much of what he said after that, just that he wanted me to have a lumbar puncture.
I got into the car with my
Mom and her hubby and just broke down. My Mom actually crawled over the seat to hold me.
So many emotions hit me at
once, I was scared, relieved, angry, confused. I cancelled the lumbar puncture, yes I'm a chicken. But I hear there may be
a blood test coming soon to dx MS and also to see how the progression is going.
So this is my story of being
in limboland (which is a word to describe someone with symptoms and no diagnosis), the docs that shrugged most of my problems
off to anxiety, and my neuro saying the words MS lesion.
UPDATE-Well I finally had my lumbar puncture in April, and
the actual procedure wasn't as bad as I thought it would be. The radiologist assistant did it with flouroscope which is an
xray to see just where the needle is going in. I needed this because of my disc problems.
The RA injected lidocaine which
only hurt briefly, and then he inserted the needle(I believe a 22 gauge) and I didn't feel that at all. He did have a little
problem getting the fluid to start and it did seem to take longer than the 10 minutes my neuro mentioned, actually it was
more like a half hour. I did get a weird sensation in my head, which I guess is from the lessened amount of fluid around the
brain. I was given a little oxygen and then felt better.
What really wasn't pleasant was the aftercare. I needed to
urinate a few times and when the nurse removed the bedpan it spilled all up my back, I was soaked. Instead of her changing
the bandage she left it wet and only threw a liner under me. I was sorta freaked concerned about infection but I never got
one.
I saw my neuro about a month later and he said the lumbar didn't show signs of MS, all I had was a very slight
elevated protein. I asked him if this meant I didn't have MS, he said no, but less likely. I had another MRI done and one
of my lesions increased in size.
MS is one of the diseases that is difficult to diagnose in its early stages, unless
the MRI, lumbar puncture and evoked potential tests, along with the neuro exam come out abnormal. Most people wait many years
for a dx. and have gone through so much. I pray that the blood test is approved soon and that others can be diagosed or hopefully
have MS ruled out early instead of living? so long with the unknown.
Having an MRI done
I've had 5 brain MRI's, and being a little (well more then alittle) claustrophobic, here are some tips to get through
it.
Bring someone with you to sit by the machine and rub your feet.
Ask ahead of time if they furnish music, they
usually give you headphones to drown out the clanking noises.
Ask the technician to let you know when the test is 1/4
over, 1/2 over etc.
If possible ask your doc for a xanax or some other tranquilizer if your really nervous.
The MRI does NOT hurt at all, just that you are in the machine a half hour or more
depending if you need to have contrast ( a dye injected with IV) There is different noises during the test, and your head
is kept still.
Below is a pic of an MRI machine, some look a little different. I asked for the open MRI but my neuro
said it's not as good, I think he hates me, ha ha.
| here's a pic of a "normal" brain |
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| get a load of those eye sockets, jeez! |
| And this is an abnomal MRI |
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| showing MS lesions |
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