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I am a 47 year old male married to a marvelous woman named Charo. My
profession is a Bodily Injury insurance adjuster. We live in San Diego, CA. I am a
Christian who believes God makes no mistakes; that He puts burdens in our
lives, not to make us suffer, but to teach us how to see those things in life that
are really important in order to bring us closer to Him.
For detailed events, see My Symptoms Time Line.
I was diagnosed with Multiple Sclerosis in October, 2005 when I went to an
Ophthalmologist due to blurred vision in my right eye that I could not see past. An
MRI showed Optic Neuritis as the cause of my vision problem. Unfortunately, the
MRI also showed multiple lesions in the white matter of my brain. This diagnosis
explained why I was experiencing strange and bizarre symptoms for many years,
but I just didn't know they were caused by MS.
My vision returned after about 9 weeks. The following months saw a progression
of symptoms starting with fatigue, anxiety attacks, severe spasms in my chest,
both legs, numbness and stiffness in both legs and arms. I walked with a cane
at times. I was seen at the ER three times from September of 2006 to February
of 2007. The disease progressed to the point where it became difficult to walk
due to numbness and spasms in my legs and back. The most debilitating
symptoms were episodes of major depression that made daily life almost
unbearable. However, the worst symptoms were cognitive in nature, such as
short-term memory loss and diminished ability to mentally focus. I had always
prided myself in being of above-average intelligence. But my new cognitive
disabilities showed me how vain I really was about my cognitive abilities. I had
always taken it for granted.
The number of prescriptions I took daily grew to such a quantity that I needed a
small bowl to hold my thrice-daily dosage. I remember as a kid seeing my
grandmother taking a lot of pills, but not as many as I now take. And these
medications are solely to treat the symptoms, not the disease. I realized my
doctors could do nothing for me. I knew at that point that I had to be my own
advocate and help myself.
After my ER visit in September of 2006, I was out of work for several weeks.
During that time, I researched the disease to become as familiar with its
workings as possible. I spoke to many doctors and nurses. I had the privilege of
speaking and corresponding with Dr. Dennis Steindler of the McKnight Brain
Institute in Florida and Scott Johnson of the Myelin Repair Foundation in
California. I learned that, to date there is no effective treatment in use by the
general medical community to halt the progression of the disease. The drugs
that are available are prescribed to mitigate the symptoms, but have no real
effect on disease progression. There are promising drugs in developmental
stages. But none are currently approved by the FDA; and none likely to be
approved for years.
As there was no drug option, I began to look for novel procedures that were used
to treat other auto-immune diseases. That is how I discovered a procedure
called Autologous Hematopoietic Stem Cell Transplantation offered at
Northwestern University in Chicago, Illinois, led by Dr. Richard Burt. So in
January of 2007, my wife and I flew to Chicago for a neurological evaluation.
At the time, I was double-insured with Kaiser Permanente and Blue Cross. I was
evaluated by Dr. Richard Burt of Northwestern Memorial Hospital in Chicago, IL,
and was found to be a good candidate. Unfortunately, both Kaiser Permanente
and Blue Cross twice denied coverage for this procedure, despite its high
remission rate. The procedure involved no new medical processes nor new,
unapproved drugs. Yet it's use as a treatment option for MS was relatively new.
Both insurers denied coverage because they considered this treatment to be
"experimental" (sic), not medically necessary, or a better treatment option than
the standard treatment protocols; and thus not a covered procedure.
This procedure is not a cure, but there was good statistical data that it could put
me into a sustained remission, or slow the progression of the disease long
enough for an adequate treatment to be developed and approved by the FDA.
Therefore, after careful consideration and much prayer we determined that our
only option to obtain this treatment was to pay for it ourselves.
It was a financial challenge for us to obtain the funding ($90,000) required to
begin the procedure, considering the other financial obligations we already had.
We had attempted to liquidate our real estate investments. But due to the Market
downturn, could not get any buyers. We liquidated as many assets as possible,
but it was not enough to cover the entire deposit. So, we requested and received
a loan from my parents of the entire $90,000. This was a LOAN! The money
came from their personal and retirement savings for which they worked their
entire lives to save. We have been making monthly payments since I started
back to work. Without their financial assistance, the procedure would not have
been possible.
We have been attempting to sell our investment condo, but in this market that
proved impossible; unless we wanted to sell it for 40% of the amount that we
paid for it. Being upside-down (Loan-to-Value) made selling impossible. So that
was no option. My only earnings from May through September of 2007 came
from the California State Disability Insurance, which paid 60% of my gross pay.
My wife is still working, but the medical bills far exceeded our savings. I am back
to work now, thanks to my very flexible employer, American Claims Management.
However, the procedure cost actually exceeded $100,000, for which we are still
paying to Northwestern and my parents monthly.
I put up a Video Procedure Page which detailed my experiences during the two
month procedure. It was not an easy experience to go through. There was much
pain and discomfort, sleepless nights, weight loss, and loss of hair. There was
also the risk of a fatal infection for a few days while I had no immune system. But
the MS symptoms I'd been experiencing during the last 2 years or so were just
as bad (except for the hair loss). I was released from the hospital on July 28,
2007.
It has been nearly two years since I was released. My MS symptoms remain, but
they are the same symptoms I had prior to the procedure. They have diminished
gradually, but very significantly. My strength also slowly returned. I am now
walking normally and can stay on my feet for hours without much pain. I no
longer use a cane at all. I have not had a bad depression episode since July of
2008. Since my immune system was killed by the procedure, I'm optimistically
certain that I won't get any new relapses (No new lesions in my brain). The MRI's
I have received since the procedure have shown no new or active lesions.
In mid February of 2008, I got the flu (with gastroenteritis), which really
knocked me down. But with rest, I recovered. My wife got the flu, too; as did
many people we know.
In February of 2009, I got the flu again. A bad case this time. It really kicked my
butt. But I recovered, again. It goes to show that my new immune system is
functioning as it should, just not as robust as it did before. That will take more
time.
I see now that Dr. Burt was right, way back in 2007, when he told me that any
healing or improvements may take two years to truly manifest. My brain appears
to have been attempting to heal the existing lesions. My immune system will
return to full strength, eventually. Of that I am certain. What is less certain is
whether my new immune system can repair a significant portion of the damage
already done to my Central Nervous System. So far, there has been definite
healing as I recover more strength and my cognitive abilities improve (thank
God!)
It is the mission of this website to provide the valuable information of this
procedure and my recovery experiences to the MS Community (more than
400,000 in the United States alone) and the World at large. Sadly, this procedure
is not for everyone with MS. It works best for those in the RRMS (Relapsing-
Remitting) stage. I am sorry to say that those with advanced disease progression
would receive little benefit from this procedure. Although there is much research
currently underway to find a drug model that will actually stop the disease and
heal the damage already done. That will, unfortunately, be years in coming, if at
all.
I see this procedure as the first step in curing MS for good. That being a halt to
the progression of the disease from doing further damage, The second logical
step being a way to regenerate myelin and to accelerate the creation of new
neural connections to replace those destroyed beyond repair. My life from this
point onward will be dedicated to doing the following:
My prayer for myself, and for those afflicted with this disease, is for everyone to
understand that God would not place this burden on us if He didn't feel we could
handle it. God is good. He gives strength, and answers our prayers according to
His will. I pray that by undergoing and documenting this procedure, the message
will get out that there is a viable treatment for Relapsing-Remitting MS. If the
procedure is done at an early stage in the disease progression (as mine is),
then there is a chance to dramatically improve the quality of life and to avoid
imminent disability. My experience with this disease thus far has proven without
a doubt that God truly directs my life. He gave me unlooked-for opportunities
when all things in my life looked hopeless. He showed me the truth that many
things in my life that I thought were important, really were not. While I have
disappointed people close to me and failed many times, God never fails.
Whatever happens to me here I know that, through Jesus, I am saved and given
eternal life with Him.
profession is a Bodily Injury insurance adjuster. We live in San Diego, CA. I am a
Christian who believes God makes no mistakes; that He puts burdens in our
lives, not to make us suffer, but to teach us how to see those things in life that
are really important in order to bring us closer to Him.
For detailed events, see My Symptoms Time Line.
I was diagnosed with Multiple Sclerosis in October, 2005 when I went to an
Ophthalmologist due to blurred vision in my right eye that I could not see past. An
MRI showed Optic Neuritis as the cause of my vision problem. Unfortunately, the
MRI also showed multiple lesions in the white matter of my brain. This diagnosis
explained why I was experiencing strange and bizarre symptoms for many years,
but I just didn't know they were caused by MS.
My vision returned after about 9 weeks. The following months saw a progression
of symptoms starting with fatigue, anxiety attacks, severe spasms in my chest,
both legs, numbness and stiffness in both legs and arms. I walked with a cane
at times. I was seen at the ER three times from September of 2006 to February
of 2007. The disease progressed to the point where it became difficult to walk
due to numbness and spasms in my legs and back. The most debilitating
symptoms were episodes of major depression that made daily life almost
unbearable. However, the worst symptoms were cognitive in nature, such as
short-term memory loss and diminished ability to mentally focus. I had always
prided myself in being of above-average intelligence. But my new cognitive
disabilities showed me how vain I really was about my cognitive abilities. I had
always taken it for granted.
The number of prescriptions I took daily grew to such a quantity that I needed a
small bowl to hold my thrice-daily dosage. I remember as a kid seeing my
grandmother taking a lot of pills, but not as many as I now take. And these
medications are solely to treat the symptoms, not the disease. I realized my
doctors could do nothing for me. I knew at that point that I had to be my own
advocate and help myself.
After my ER visit in September of 2006, I was out of work for several weeks.
During that time, I researched the disease to become as familiar with its
workings as possible. I spoke to many doctors and nurses. I had the privilege of
speaking and corresponding with Dr. Dennis Steindler of the McKnight Brain
Institute in Florida and Scott Johnson of the Myelin Repair Foundation in
California. I learned that, to date there is no effective treatment in use by the
general medical community to halt the progression of the disease. The drugs
that are available are prescribed to mitigate the symptoms, but have no real
effect on disease progression. There are promising drugs in developmental
stages. But none are currently approved by the FDA; and none likely to be
approved for years.
As there was no drug option, I began to look for novel procedures that were used
to treat other auto-immune diseases. That is how I discovered a procedure
called Autologous Hematopoietic Stem Cell Transplantation offered at
Northwestern University in Chicago, Illinois, led by Dr. Richard Burt. So in
January of 2007, my wife and I flew to Chicago for a neurological evaluation.
At the time, I was double-insured with Kaiser Permanente and Blue Cross. I was
evaluated by Dr. Richard Burt of Northwestern Memorial Hospital in Chicago, IL,
and was found to be a good candidate. Unfortunately, both Kaiser Permanente
and Blue Cross twice denied coverage for this procedure, despite its high
remission rate. The procedure involved no new medical processes nor new,
unapproved drugs. Yet it's use as a treatment option for MS was relatively new.
Both insurers denied coverage because they considered this treatment to be
"experimental" (sic), not medically necessary, or a better treatment option than
the standard treatment protocols; and thus not a covered procedure.
This procedure is not a cure, but there was good statistical data that it could put
me into a sustained remission, or slow the progression of the disease long
enough for an adequate treatment to be developed and approved by the FDA.
Therefore, after careful consideration and much prayer we determined that our
only option to obtain this treatment was to pay for it ourselves.
It was a financial challenge for us to obtain the funding ($90,000) required to
begin the procedure, considering the other financial obligations we already had.
We had attempted to liquidate our real estate investments. But due to the Market
downturn, could not get any buyers. We liquidated as many assets as possible,
but it was not enough to cover the entire deposit. So, we requested and received
a loan from my parents of the entire $90,000. This was a LOAN! The money
came from their personal and retirement savings for which they worked their
entire lives to save. We have been making monthly payments since I started
back to work. Without their financial assistance, the procedure would not have
been possible.
We have been attempting to sell our investment condo, but in this market that
proved impossible; unless we wanted to sell it for 40% of the amount that we
paid for it. Being upside-down (Loan-to-Value) made selling impossible. So that
was no option. My only earnings from May through September of 2007 came
from the California State Disability Insurance, which paid 60% of my gross pay.
My wife is still working, but the medical bills far exceeded our savings. I am back
to work now, thanks to my very flexible employer, American Claims Management.
However, the procedure cost actually exceeded $100,000, for which we are still
paying to Northwestern and my parents monthly.
I put up a Video Procedure Page which detailed my experiences during the two
month procedure. It was not an easy experience to go through. There was much
pain and discomfort, sleepless nights, weight loss, and loss of hair. There was
also the risk of a fatal infection for a few days while I had no immune system. But
the MS symptoms I'd been experiencing during the last 2 years or so were just
as bad (except for the hair loss). I was released from the hospital on July 28,
2007.
It has been nearly two years since I was released. My MS symptoms remain, but
they are the same symptoms I had prior to the procedure. They have diminished
gradually, but very significantly. My strength also slowly returned. I am now
walking normally and can stay on my feet for hours without much pain. I no
longer use a cane at all. I have not had a bad depression episode since July of
2008. Since my immune system was killed by the procedure, I'm optimistically
certain that I won't get any new relapses (No new lesions in my brain). The MRI's
I have received since the procedure have shown no new or active lesions.
In mid February of 2008, I got the flu (with gastroenteritis), which really
knocked me down. But with rest, I recovered. My wife got the flu, too; as did
many people we know.
In February of 2009, I got the flu again. A bad case this time. It really kicked my
butt. But I recovered, again. It goes to show that my new immune system is
functioning as it should, just not as robust as it did before. That will take more
time.
I see now that Dr. Burt was right, way back in 2007, when he told me that any
healing or improvements may take two years to truly manifest. My brain appears
to have been attempting to heal the existing lesions. My immune system will
return to full strength, eventually. Of that I am certain. What is less certain is
whether my new immune system can repair a significant portion of the damage
already done to my Central Nervous System. So far, there has been definite
healing as I recover more strength and my cognitive abilities improve (thank
God!)
It is the mission of this website to provide the valuable information of this
procedure and my recovery experiences to the MS Community (more than
400,000 in the United States alone) and the World at large. Sadly, this procedure
is not for everyone with MS. It works best for those in the RRMS (Relapsing-
Remitting) stage. I am sorry to say that those with advanced disease progression
would receive little benefit from this procedure. Although there is much research
currently underway to find a drug model that will actually stop the disease and
heal the damage already done. That will, unfortunately, be years in coming, if at
all.
I see this procedure as the first step in curing MS for good. That being a halt to
the progression of the disease from doing further damage, The second logical
step being a way to regenerate myelin and to accelerate the creation of new
neural connections to replace those destroyed beyond repair. My life from this
point onward will be dedicated to doing the following:
- Establish an organization to financially assist others in obtaining this
procedure when insurance will not provide coverage, as in my case. - Through this organization, invest only in research that is dedicated to the
regeneration and replacement of neurons.
My prayer for myself, and for those afflicted with this disease, is for everyone to
understand that God would not place this burden on us if He didn't feel we could
handle it. God is good. He gives strength, and answers our prayers according to
His will. I pray that by undergoing and documenting this procedure, the message
will get out that there is a viable treatment for Relapsing-Remitting MS. If the
procedure is done at an early stage in the disease progression (as mine is),
then there is a chance to dramatically improve the quality of life and to avoid
imminent disability. My experience with this disease thus far has proven without
a doubt that God truly directs my life. He gave me unlooked-for opportunities
when all things in my life looked hopeless. He showed me the truth that many
things in my life that I thought were important, really were not. While I have
disappointed people close to me and failed many times, God never fails.
Whatever happens to me here I know that, through Jesus, I am saved and given
eternal life with Him.
| Contact brian@allyoumed.com |
