Kristin's Trip To Israel - Stopping MS: October 2015

Monday, October 19, 2015

Update! Very long overdue +166 days

My hair is back. It looks like I have a pixie cut and people have been complimenting me on my new haircut. I'm still hoping that it grows fast!

Recovery really is like a rollercoaster. I have had great days and not so great days. My walking,
which was better is not so great this week.

My physical therapist released me from her care and now I'm on my own. I started going back to my
gym about 6 weeks ago. At first I was only doing the elliptical machine, weights and stretching.
Now I am going to Pure Barre classes. The Pure Barre classes are a combo of Pilates, dance, cardio and strength training. This is a video of a Pure Barre class. Not the one that I am going to, but it will give you an idea of what it is about.

Pure Barre Class

I go to the Pure Barre class on Monday, Wednesday and Fridays and I go to yoga on Tuesdays and Thursdays.

The oncologist is having me come once a month now. Last week my WBC was up to 5.7 so
we were all happy about that!

More later!

+90 Days

I was +90 days on Wednesday, August 5th 2015. Time has flown by faster than I thought
it would. Physical Therapy is twice a week and exercises at home. I'm trying to go for
a walk everyday or ride my bike. The weather has been beautiful. Being on my computer
has not been easy. I started this blog post last week, but am only now getting back
to it!

I have been following the main HSCT Facebook group and the Israel one. There are
so many of us that need to have HSCT. It is heartbreaking that it is not available to us
in the US and that it expensive. My having the procedure was not a hard decision.
I had failed 3 MS drugs (DMD's) and my walking was getting worse everyday.

One of the questions that someone asked in a Facebook group was, what are the
negative parts of the treatment? They pointed out that most people just talk about
the positive parts. So, I am going to talk about the negatives in this post.

My hair fell out, almost everywhere and is not growing back as quickly as I hoped
it would! My eyebrows are good and my eyelashes are finally back. I only lost the
lashes on my right eye. My brows on the right side did get thinner. The funny thing
about all this is that my foot drop is on my right side also! MS must like my right
side much better than the left.

Being bald is not fun. I have chosen to not get a wig and am wearing hats when I
go outside. The sad part is that most people think that I have cancer and there is not
a day that goes by, when I am in a store or up at a doctor appointment, that someone
asks me what kind of cancer I have. Then I have to tell them the HSCT story.
People are always shocked when they hear it and I have yet to meet someone that
doesn't know someone with MS. I guess that I should have some cards made with
the HSCT info to hand out!

What is MS

Multiple Sclerosis (MS) is a chronic degenerative disorder affecting the Central
Nervous System: the Brain and Spinal cord. MS is one of the leading causes of
neurological disabilities in young adults. MS affects both genders, more
commonly in women than men.

The Mayo Clinic lists four main patterns of Multiple Sclerosis:

Relapsing remitting: This type of MS is characterized by clearly defined flare-ups,
followed by periods of remission. The flare-ups typically appear suddenly, last a
few weeks or months, and then gradually disappear. Most people with MS have
this form at the time of diagnosis.

Primary Progressive: People with this less common form of MS experience a
gradual decline, without periods of remission. People with this form of MS are
usually older than 40 when symptoms begin.

Secondary Progressive: More than half the people with relapsing remitting MS
eventually enter a stage of continuous deterioration referred to as secondary
progressive MS. Sudden relapses may occur, superimposed upon the continuous
deterioration that characterizes this type of MS.

Progressive relapsing: This is primary progressive MS with the addition of
sudden episodes of new symptoms or worsened existing ones. This form is
relatively rare. (MayoClinic.com 1998, 2004).

The signs and symptoms of MS are fatigue, weakness, numbness, and difficulty
with coordination and loss of balance. A percentage of patients complained of
visual disturbances including blurry vision, patchy blindness and total blindness.

The disease process of MS involves the nerve cells called neurons. In Multiple
Sclerosis nerves are hardened in multiple locations of the body, the breakdown is
scattered irregularly throughout the body, decreasing aspect of functional abilities,
depending on which nerves are affected.

The cause of MS is unclear at this time. Presently research is done in the areas
of viral, immunology and genetic factors. Autoimmune response triggered by the
exposure to a virus or environmental trigger in genetically susceptible individuals.
The exposure to a virus causes reactions that form antibodies to fight the virus.
Antibodies attack the myelin instead of the virus- an autoimmune response.

There is no cure for MS. The medications given to the patient are for pain
management and relief of symptoms. Side effects of these medications are:
weakness, fatigue, grogginess, decrease in alertness, all these symptoms can
interfere with the performance of Activity of Daily Living (ADL).