I began this log on March 04, 2005, because (since 2004) I began going to the doctor for various
physical complaints every two to three months. Most of the time, the doctor diagnosed infections of
various kinds, (sinus, bladder, UTI, etc). Sometimes tests showed no sign of infection, but the doctor
usually gave me an antibiotic anyway.
As these illnesses continued for no apparent reason, I became suspicious that there may be an
unknown, underlying condition. So I started keeping this log.
_____________________________________________________________
March 4, 2005
• Sudden onset of pain and numbness to rectal area, light-headedness, physical weakness, fever, and
nausea.
March 7, 2005
• Appointment with GP. Pain and difficulty urinating. Frequent bowel movements. Discomfort with bowel
movements. Sore throat and sinus pressure. Blood tests and urinalysis. Both with negative results.
Prescription for Amoxicillin.
April 20, 2005
• Appointment with GP. Pain and difficulty urinating. Pain and numbness to rectal area, light-
headedness, physical weakness, fever, and nausea. Sore throat and sinus pressure. Frequent bowel
movements. Discomfort with bowel movements. Blood tests and urinalysis. Both with negative results.
Prescription for Bactrin.
May 31, 2005
• Fresh blood with bowel movement. No blood in stool, just fresh blood. Soreness in rectum. Pain to
rectal area, light-headedness, frequent physical weakness, fever, and nausea.
June 3, 2005
• More fresh blood with bowel movement. No blood in stool, just fresh blood. Soreness in rectum. Pain
and numbness to rectal area, light-headedness, physical weakness, fever, and nausea. Sore throat and
sinus pressure.
June 4, 2005
• Went to Urgent Care at Sharp-Grossmont for bleeding rectum, difficulty urinating and discomfort.
Sigmoidoscopy performed. No polyps detected. Was advised to discontinue use of ibuprofen and was
referred to gastroenterologist.
October 14, 2005
• Loss of vision in the right eye. Big blurry spot on the center of visual field. Unable to see well or use
computer or read (without use of magnifying glass) as left eye was not good to begin with. Kaiser
ophthalmologist stated probable diagnosis is optic neuritis. Referred for an MRI and to a neurologist. The
neurologist appointment was for next February, more than three months after the ophthalmologist
appointment.
November 10, 2005
• Vision improving in the right eye, as ophthalmologist stated it would.
February 25, 2006
• Experiencing periodic joint pain and muscle aches. I also have been experiencing trouble sleeping
through the night, waking several times since the optic neuritis episode. The vision problem is gone, but
the sleep problems remain. In addition, I find myself napping often during the day or just yawning a
lot. Physical fatigue is also a recurring problem. Discontinued Prozac and zanax as I felt it was no longer
necessary. The first appointment with the Kaiser neurologist, George Spinka, was getting the news that the
MRI showed that I had MS. The Neurologist prescribed Betaserone injections.
July 02, 2006
• Muscle fatigue in legs. General fatigue overall. Fatigue and leg weakness lasted for two weeks, then
disappeared. Appointment with Kaiser neurologist, George Spinka,. Evaluation only. No prescriptions.
August 25, 2006
• Muscle fatigue in legs again. General fatigue overall. Insomnia and spasticity begin in both legs, then
spasticity begins in hands and arms as well as legs. Pain in joints in knees and shoulders begin.
Spasticity cycles through body in waves. Flu-like symptoms begin.
September 12, 2006
• Went to ER in early AM. Hve not slept in four days. Urinary retention and bowel difficulties. Pain in
lower back and abdomen. Pain, stiffness, and numbness in legs. Almost incapable of walking. No appetite
in days. Discontinued working this day. ER neurologist was contacted.
September 13, 2006
• After ER neurologist contacted my neurologist, George Spinka, my Kaiser Neurologist's nurse called
and advised me to begin corticosteroid treatment. Began 5-day course of intravenous corticol steroids
(Solumedrol). Called neurologist office to question why I was not informed of side effects of Solumedrol. No
answer. Side effects of sleeplessness and depression are acute. Made self-decision to discontinue oral
prednisone post IV treatment as the oral prednisone caused severe digestive reaction in lower GI (bleeding
and pain). Overall leg pain and inflammation was reduced due to IV Solumedrol.
October 06, 2006
• Started back to work again. Overall spasticity and weakness remain, but more manageable now.
Buzzing sounds in right ear began today.
October 19, 2006
• Leg weakness, stiffness in calves/knees, sharp pain in lower back, buzzing in right ear, facial and
ocular spasticity begin, insomnia, and overall spasticity starting to intensify again. Called Kaiser
neurologist, George Spinka, several times over three days. After several requests for medication for the
spasticity, the Kaiser neurologist, George Spinka, prescribed Beclafen for spasticity on October 27, 2006.
Baclafen, combined with ibuprofen and topical arthritis rub (Aspercreme) seem to be most effective.
November 01, 2006
• Most all symptoms seem to be receding. Minor pain/stiffness in legs and lower back. Spasms in
legs/feet, face and trunk that cycle from day to day. Slight limp to right leg. Minor urinary/bowel difficulties,
but slowly resolving. Buzzing in right ear not yet resolved. Does not adversely affect ability to work.
November 03. 2006
• Finally got in to see Kaiser neurologist, George Spinka, at Vandevere office after complaint to Kaiser
Member Services. Advised him that I did not believe Betaserone was working. Asked him to prescribe
something for sleeplessness, He prescribed Desyrel. Gave neurologist info on Stem Cell procedure I was
interested in participating in and asked him for a referral for the evaluation in Chicago. He stated he would
write something up and have his nurse forward it to me.
• Received the referral on November 13, 2006. It was not, in fact a referral at all. It was a written
statement stating that he was the treating physician. Kaiser will not provide referral to Dr. Burt of
Northwestern University in Chicago.
November 19, 2006
• Symptoms progressing again. Pain/stiffness in legs. Buttocks have become numb. Difficulty sitting for
lengthy periods. Limp in right leg worsening. Shooting pains in arms and legs. Acute bouts of depression
with thoughts of suicide and deep despair that lasts for two-three days at a time. Buzzing in right ear louder
and more pronounced. Now ringing in left ear that is continuous. Unable to work in week prior to
Thanksgiving. Unable to contact neurologist after several attempts.
November 27, 2006
• As I was insured with Kaiser through my wife's employer and Blue Cross through my employer, I
decided to try Blue Cross to see if I received better treatment (or at least a referral to Northwestern). My first
appointment with Blue Cross physician. After lengthy discussion of my symptoms, he ordered an MRI
series with enhancements. Set appointment to see Blue Cross neurologist for February of 2007.
November 29-December 01, 2006
• Called Kaiser neurologist's office and requested another treatment of Solumendrol, but only three-day
course to minimize side effects. Three-day course of Solumedrol granted by nurse. Sleep is sporadic and
last only three hours per night due to Solumedrol. Pain, stiffness and spasms in legs, arms and back.
Using cane and neoprene knee braces all the time now.
• One week post Solumedrol treatment, the first bout of severe depression hits again. Numbness in
butt at terminus of coccyx. Buzzing in right ear and ringing in left ear continuous. Overall numbness and lack
of tactile sensation in skin on face, neck, butt, genitalia, and shins.
December 4, 2006
• Spoke directly with Dr. Richard Burt of Northwestern University Hospital regarding possibility of taking
part in Hematopoietic Stem Cell therapy that could possibly put my MS into remission, at least for the near
term. Scheduled dates in January to fly to Chicago for evaluations.
December 11, 2006
• Received MRI of Brain and Cervical Spine. Double enhancements of gadolinium used.
• Received MRI reports on December 18. Cervical showed two enhanced lesions in cervical spine
between C3-C4. Brain MRI showed several enhanced lesions in the white matter.
New Years Eve, December 31, 2006
• Regaining some leg strength. Sharp pains in fingers and feet seem to indicate nerve healing. Tactile
sensations returning slowly. Mornings and late evenings remain the best for activity. Afternoons and early
evenings are when pain and spasms are worst. Overall attitude getting lighter; more like myself again.
Although severe depression occurs for three-four hour periods, but terminates as quickly as it comes.
January 10, 2007
• I appear to have come down with an upper respiratory infection. Sore throat and inflamed sinuses. My
blood pressure has averaged 140/100 for three days. Heart rate between 100-125 BPM. This could be due
to use of Afrin. Afrin use discontinued. I called Kaiser neurologist, who advised me to call GP to handle. I
saw GP today, who prescribed Flonase to clear sinuses and Altenolol to lower heart rate and blood
pressure. First day taking Atenolol, heart rate reduced to 75 BPM, but blood pressure still at 140/100.
Hopefully with continued use, the blood pressure will return to normal.
January 16, 2007
• In Chicago for neurological evaluation with neurologist, Dr, Roman Balabanov. Score of 2.5 on the
EDSS scale. Next day I was evaluated by immunologist, Dr. Richard Burt at Northwestern University
Hospital. Based on rapidly progressive nature of my disease and the relative early stage, I was
considered a good candidate for the stem cell procedure. As I am double-insured, will begin process to
gain authority for procedure from either Blue Cross or Kaiser. Otherwise, my out-of-pocket cost will be at
least $90,000.
• Sporadic bouts of severe depression have been happening for past two weeks involving despair and
crying for no apparent reason,
January 30, 2007,
• Could not go to work due to fatigue and leg pain as well as tremendous daily depression. Heart rate
and blood pressure vacillating wildly. Went to ER. Was discharged and was told to contact neurologist for
Rx of anti-depressants and pain killers.
• Next day, called Kaiser neurologist. He was out of town. Asked to see back-up neurologist. Nurse
advised no back-up available. If emergency, go to ER.
February 2, 2006
• Call to Kaiser’s Member Services. Advised of difficulties with assigned neurologist. Advised I needed
to see about getting pain killers and anti-depressants as pain and depression were becoming too much to
handle. Also asked Member services to set me up with a new neurologist as assigned neurologist was
obviously incapable of treating my disease properly. Member Services made appointment with
Psychologist and Psychiatrist. Went directly to appointment and spoke to psychologist, who referred me to
a psychiatrist (who was also a neurologist). He prescribed anti-depressant (Wellbutrin).
February 5, 2007
• Saw Blue Cross neurologist, Christopher Bradley. After thorough evaluation, he advised to definitely
pursue a change from Betaserone to Copaxone as it was obvious from past performance that Betaserone
was not effective. Informed him of my intention to pursue stem cell therapy. He stated it may be promising,
but he would need to be more familiar with the procedure before he would advocate it. Advised him I would
forward all procedure and historical statistics to him for review.
February 8, 2007
• Went to ER again. Tremendous pain in all muscle groups as well as systemic spasm. Difficulty
breathing due to muscle spasms. Severe depression ensued. ER doctor gave IV of saline with morphine
and Ativan. Pain and spasticity reduced and I was released with a prescription for Ativan and Vicodin. I was
to take Ativan in addition to Baclofen. Only side-effect was from Vicodin if I did not eat first (vomiting).
March – April, 2007
• Prescription of Ativan helps a great deal. I have been working without much interruption due to illness.
At this time, both Kaiser and Blue Cross have denied coverage twice for the Hematopoietic Stem Cell
therapy. I appealed to the state Independent Medical Review Board. IMR three doctor panel denied
coverage of benefits on a 2 to 1 vote (two doctors against and one doctor approved), stating that the
procedure would not likely be of greater benefit than the standard treatment course that I am currently
partaking.
May 02, 2007
• Informed Dr. Burt of Northwestern Memorial Hospital that I will pay for the procedure out-of-pocket.
Schedule for testing and procedure was calendared to beginning June 4, 2007 and extend to July 31, 2007.
June - July 28, 2007
• Underwent the Autologous Stem Cell with High dose Cyclophosphamide. See Procedure Videos at
http://www.allyoumed.com/Procedure_Videos.html.
August - September, 2007
• Return home to San Diego. Lost 32 pounds. Mostly muscle mass. Very weak and tired. Strength
slowly returns in the two months after procedure. Old MS symptoms still present, coming and going in
cycles lasting days. Each individual symptom has it's own cycle. Sometimes overlapping. My local
physician, Dr. John Turla, had agreed to care for me using the written instructions of Dr. Burt. This involved
regular evaluations and monthly blood tests.
October, 2007
• Returned to work. I probably should not have returned so soon, but money was so tight, that I was
forced to work. It was all I could do to make it through each day, I was so exhausted. Fortunately, the old MS
symptoms appeared to be not a strong as before and my leg strength was slowly improving. Although even
minimal physical exertions caused pain and exhaustion.
November - December, 2007
• The MS symptom cycles slowly becoming shorter in duration and intensity. Leg strength slowly
improves. Depression episodes and foggy mind happen less frequently and are of shorter duration.
Attitude improves.
January - March, 2008
• New MRI in January showed no active lesions and the two lesions that were on my Cervical spine
were no longer detectable. The MS symptom cycles are flattening out. They are all still there, but they are
becoming less of a barrier to a normal existence. I am able to start taking on home projects and serve
more at Church. In February, I did come down with a bad case of Flu; which put me in the hospital for two
days. But my young immune system eventually kicked-in and by March, I had recovered. In February, I also
flew back to Chicago for the 6-month evaluation. The MRI tests results showed that the disease was in
remission. The evaluation reports summary from the neurologist, Dr. Roman Balabanov, showed that my
EDSS Scores were 2.5 in January of 2007, worsened to 3.0 in June of 2007, then improved to 2.0 at the 6-
month post procedure evaluation in February of 2008. These results show conclusively that this procedure
was far more beneficial than the standard of care; in contrast to the opinions of my insurance carriers and
the DMHC IMR Board.
April – May, 2008
• Cycles of MS symptoms continue to reduce in frequency and intensity. Leg strength increses
dramatically. Muscle mass in the legs has increased to almost pre-symptoms (2005) state. Able to stay on
my feet for several hours at a time. Although pain in legs and tiredness ensue afterwards. But these are
gone the next day. My workdays are back to normal with little fatigue or pain. My sleep patterns are
normalizing. Only rare instances of insomnia. I am able to take on more projects at home and church with
less fatigue. This is not to say that I have completely recovered to a pre-symptom state. Rather, it has been
a slow progression getting to this point. When under alot of stress, the MS symptoms come back with
strength, but the recovery has been quick; about one-two days.
June, 2008
• Cycles of MS symptoms seem to be getting worse with 100 mile per day drive to work and back. There
don't seem to be any new symptoms, just increasing exacerbations of the existing symptoms. Mostly more
spasticity, ringing in the left ear. My leg strength remains good, despite the spasicity. The spasticity seem to
be mostly in the trunk of my body. Some insomnia has returned as well. Bouts of depression seem to have
returned as well. I am still working every day and going to church regularly. I am still in better condition now
than I was in 2006 through early 2007.
July 20, 2008
• It looks like I am in the middle of what appears to be a full-blown relapse. Deep depression, spasticity
in the legs and trunk, high blood pressure with racing heart beats. My physical strength is still good, but the
symptoms I am experiencing are the worst since taking the procedure. Ironic that this is happening one
year to the date from when I had the procedure. These symptoms do not appear to be new symptoms, but
the same old symptoms coming back as bad as they were at their worst. I called the transplant nurse, Kate
Quigley, asking her about whether she thinks this may be a failure of the procedure and that the
demyelinization has started again. She advised that every patient's experiences after the procedure are
different and that the procedure did not do anything to affect preexisting lesions. As I have been having alot
of financial problems and work-related issues, my stress levels have been high. She said these may also
be contributing factors. So I should not assume that the procedure failed. We shall learn the answer when I
get the new MRI series results at the end of this month.
August 15, 2008
• Great News! The MRI of July 23 once again showed no active lesions. So I guess my use of the word
"relapse" was incorrect. What I have been feeling was not a MS relapse, but the result of the damage done
to my CNS previous to the procedure. Saw Psychiatrist as depression episodes still bad. Was given Rx of
Paroxetine.
August 30. 2008
• The exacerbations have reduced. I no longer have the depression episodes. I contribute this to the
addition of the new anti-depressant. But I do have some spasticity in the trunk of my body, just not severe.
Sort of in the background. My leg strength is slowly improving as well. I am able to stay on my feet for about
an hour now. Although standing in one place or in a sitting position (driving) for more than 15 minutes gets
the spasticity going.
September 18, 2008
• Heat makes the fatigue come on. Once that starts, I get a cycle-thru of symptoms (unrinary retention,
weakness, sluggishness). If I have insomnia, it's worse. The cycles are getting of shorter duration (2-3
days). And longer periods of feeling "almost normal)".
October 31, 2008
• Began to work from home (telework accommodation) two days per week. Still taking all my
medications (just not any MS drug, like Betaserone). I'm starting to see the muscles in my legs getting
larger. Balance is much better. Ringing in the left ear is still the only constant. I'm starting to be able to tune
it out for longer periods.
January 15, 2009
• The last three months have seen a slow, but meaningful improvement. Urinary retention problems are
still present, but to a much lesser degree. I am beginning to get my multi-tasking powers back, My mind is
not as sluggish. Spasticity in the trunk of my body is persistent, but bearable.
February 23, 2009
• Taken to ER via ambulance. Flu-like symptoms with alot of throwing-up. High fever (102.9 degrees).
ER doctor diagnosed Pneumonia. Out of work for three weeks. Saw Primary Physician, who reviewed new
tests and determine it was not Pneumonia, just a bad case of flu. I did not feel my MS symptoms during this
time, as the flu symptoms overshadowed them.
March 12-16, 2009
• Saw my Primary Physician. My cholesterol levels and triglycerides were high. New Rx to reduce
cholesterol. Returned to work on March 16. Oddly enough, after the flu symptoms went away, I felt stronger
than I have felt in almost three years. Leg strength improved. Muscle mass overall was denser than before.
My cognitive abilities improved. My ability to multitask at work improved. Short term memory improved. I
noticed all this, because the quality of my work markedly improved and I got more things accomplished in a
shorter amount of time than before.
April - May 16, 2009
• The improvements of March remain. I have not had a bad symptom cycle in two months. I pray that this
continues, and continues to improve. My life feels almost normal. I am still reminded daily of my MS
symptoms. But they have become a minor inconvenience to this point. The heat of the summer is coming. I
think that will be the true test of my recovery.
June 03, 2009
• Stressful event at my job caused MS symptoms to flare. Since November of 2008, I had been able to
telework from home 2 days per week. That accommodation was taken away today. My caseload was also
increased dramatically.
July 08, 2009
• Excellent News. My wife and I are in Chicago for a few days for the annual neurological evaluation. The
MRI's taken today showed that the remission remains stable. No active lesions. My cognitive tests showed
a marked improvement, as did my leg strength and overall neurological test scores. While the MRI's still
showed extensive lesions, some healing of my Central Nervous System has occurred. As has been stated
previously, this procedure is not a cure, but meant to stop further progression. We thank God so much for
these improvements.
July 14, 2009
• The stress from my increased workload, and the 100 miles, fives days per week drive, have been
taking their toll on me, both physically and mentally. I made a final request for an accommodation from my
employer today. My request was rejected. I'm at a point now when I must make a choice between
continuing improvements to my health, or to continue working under the conditions set by my employer. It's
a personal and financial decision that we must pray about.
Summary and Comments:
Looking back at my health history, the diagnosis of MS explained a lot. I have had back problems and
numbness in the extremities on and off over the last 20 years. Neither chiropractic treatments nor
muscle relaxants seemed to help much. But as these problem were sporadic in occurrence, I did not
think much of them.
However, the continuous attacks of August, 2006 through April 2007 were the most acute in severity
and disability to date. The pain and numbness to the abdomen, lower back and buttocks, arms and
hands, leg stiffness and weakness, severe episodes of depression, light-headedness, physical
weakness, fever, sore throat, insomnia, sinus pressure and nausea have been chronic and cyclical
throughout the duration of the relapse. The Betaserone course was not effective. I changed to
Copaxone. Baclafen, Ativan and Wellbutrin with ibuprofen and muscle rub (Myoflex) have been the most
effective drugs for some symptomatic relief. For sleeping, I take Tylenol PM with occasional
Temazepam. Unclear if high blood pressure and increased heart rate were due to MS or a combination
of all the drugs I took for MS symptoms. I needed to monitor Blood Pressure carefully. Leg strength and
ability to walk/stand easily was sporadic on a daily basis. I still attempted to continue to work, but that
became more difficult as time went on. It became clear to me in late 2006 that the only way I was going
to get quality treatment was to manage my own care.
I recommend to anybody with this disease to do your research, and take control of your own health
care.
physical complaints every two to three months. Most of the time, the doctor diagnosed infections of
various kinds, (sinus, bladder, UTI, etc). Sometimes tests showed no sign of infection, but the doctor
usually gave me an antibiotic anyway.
As these illnesses continued for no apparent reason, I became suspicious that there may be an
unknown, underlying condition. So I started keeping this log.
_____________________________________________________________
March 4, 2005
• Sudden onset of pain and numbness to rectal area, light-headedness, physical weakness, fever, and
nausea.
March 7, 2005
• Appointment with GP. Pain and difficulty urinating. Frequent bowel movements. Discomfort with bowel
movements. Sore throat and sinus pressure. Blood tests and urinalysis. Both with negative results.
Prescription for Amoxicillin.
April 20, 2005
• Appointment with GP. Pain and difficulty urinating. Pain and numbness to rectal area, light-
headedness, physical weakness, fever, and nausea. Sore throat and sinus pressure. Frequent bowel
movements. Discomfort with bowel movements. Blood tests and urinalysis. Both with negative results.
Prescription for Bactrin.
May 31, 2005
• Fresh blood with bowel movement. No blood in stool, just fresh blood. Soreness in rectum. Pain to
rectal area, light-headedness, frequent physical weakness, fever, and nausea.
June 3, 2005
• More fresh blood with bowel movement. No blood in stool, just fresh blood. Soreness in rectum. Pain
and numbness to rectal area, light-headedness, physical weakness, fever, and nausea. Sore throat and
sinus pressure.
June 4, 2005
• Went to Urgent Care at Sharp-Grossmont for bleeding rectum, difficulty urinating and discomfort.
Sigmoidoscopy performed. No polyps detected. Was advised to discontinue use of ibuprofen and was
referred to gastroenterologist.
October 14, 2005
• Loss of vision in the right eye. Big blurry spot on the center of visual field. Unable to see well or use
computer or read (without use of magnifying glass) as left eye was not good to begin with. Kaiser
ophthalmologist stated probable diagnosis is optic neuritis. Referred for an MRI and to a neurologist. The
neurologist appointment was for next February, more than three months after the ophthalmologist
appointment.
November 10, 2005
• Vision improving in the right eye, as ophthalmologist stated it would.
February 25, 2006
• Experiencing periodic joint pain and muscle aches. I also have been experiencing trouble sleeping
through the night, waking several times since the optic neuritis episode. The vision problem is gone, but
the sleep problems remain. In addition, I find myself napping often during the day or just yawning a
lot. Physical fatigue is also a recurring problem. Discontinued Prozac and zanax as I felt it was no longer
necessary. The first appointment with the Kaiser neurologist, George Spinka, was getting the news that the
MRI showed that I had MS. The Neurologist prescribed Betaserone injections.
July 02, 2006
• Muscle fatigue in legs. General fatigue overall. Fatigue and leg weakness lasted for two weeks, then
disappeared. Appointment with Kaiser neurologist, George Spinka,. Evaluation only. No prescriptions.
August 25, 2006
• Muscle fatigue in legs again. General fatigue overall. Insomnia and spasticity begin in both legs, then
spasticity begins in hands and arms as well as legs. Pain in joints in knees and shoulders begin.
Spasticity cycles through body in waves. Flu-like symptoms begin.
September 12, 2006
• Went to ER in early AM. Hve not slept in four days. Urinary retention and bowel difficulties. Pain in
lower back and abdomen. Pain, stiffness, and numbness in legs. Almost incapable of walking. No appetite
in days. Discontinued working this day. ER neurologist was contacted.
September 13, 2006
• After ER neurologist contacted my neurologist, George Spinka, my Kaiser Neurologist's nurse called
and advised me to begin corticosteroid treatment. Began 5-day course of intravenous corticol steroids
(Solumedrol). Called neurologist office to question why I was not informed of side effects of Solumedrol. No
answer. Side effects of sleeplessness and depression are acute. Made self-decision to discontinue oral
prednisone post IV treatment as the oral prednisone caused severe digestive reaction in lower GI (bleeding
and pain). Overall leg pain and inflammation was reduced due to IV Solumedrol.
October 06, 2006
• Started back to work again. Overall spasticity and weakness remain, but more manageable now.
Buzzing sounds in right ear began today.
October 19, 2006
• Leg weakness, stiffness in calves/knees, sharp pain in lower back, buzzing in right ear, facial and
ocular spasticity begin, insomnia, and overall spasticity starting to intensify again. Called Kaiser
neurologist, George Spinka, several times over three days. After several requests for medication for the
spasticity, the Kaiser neurologist, George Spinka, prescribed Beclafen for spasticity on October 27, 2006.
Baclafen, combined with ibuprofen and topical arthritis rub (Aspercreme) seem to be most effective.
November 01, 2006
• Most all symptoms seem to be receding. Minor pain/stiffness in legs and lower back. Spasms in
legs/feet, face and trunk that cycle from day to day. Slight limp to right leg. Minor urinary/bowel difficulties,
but slowly resolving. Buzzing in right ear not yet resolved. Does not adversely affect ability to work.
November 03. 2006
• Finally got in to see Kaiser neurologist, George Spinka, at Vandevere office after complaint to Kaiser
Member Services. Advised him that I did not believe Betaserone was working. Asked him to prescribe
something for sleeplessness, He prescribed Desyrel. Gave neurologist info on Stem Cell procedure I was
interested in participating in and asked him for a referral for the evaluation in Chicago. He stated he would
write something up and have his nurse forward it to me.
• Received the referral on November 13, 2006. It was not, in fact a referral at all. It was a written
statement stating that he was the treating physician. Kaiser will not provide referral to Dr. Burt of
Northwestern University in Chicago.
November 19, 2006
• Symptoms progressing again. Pain/stiffness in legs. Buttocks have become numb. Difficulty sitting for
lengthy periods. Limp in right leg worsening. Shooting pains in arms and legs. Acute bouts of depression
with thoughts of suicide and deep despair that lasts for two-three days at a time. Buzzing in right ear louder
and more pronounced. Now ringing in left ear that is continuous. Unable to work in week prior to
Thanksgiving. Unable to contact neurologist after several attempts.
November 27, 2006
• As I was insured with Kaiser through my wife's employer and Blue Cross through my employer, I
decided to try Blue Cross to see if I received better treatment (or at least a referral to Northwestern). My first
appointment with Blue Cross physician. After lengthy discussion of my symptoms, he ordered an MRI
series with enhancements. Set appointment to see Blue Cross neurologist for February of 2007.
November 29-December 01, 2006
• Called Kaiser neurologist's office and requested another treatment of Solumendrol, but only three-day
course to minimize side effects. Three-day course of Solumedrol granted by nurse. Sleep is sporadic and
last only three hours per night due to Solumedrol. Pain, stiffness and spasms in legs, arms and back.
Using cane and neoprene knee braces all the time now.
• One week post Solumedrol treatment, the first bout of severe depression hits again. Numbness in
butt at terminus of coccyx. Buzzing in right ear and ringing in left ear continuous. Overall numbness and lack
of tactile sensation in skin on face, neck, butt, genitalia, and shins.
December 4, 2006
• Spoke directly with Dr. Richard Burt of Northwestern University Hospital regarding possibility of taking
part in Hematopoietic Stem Cell therapy that could possibly put my MS into remission, at least for the near
term. Scheduled dates in January to fly to Chicago for evaluations.
December 11, 2006
• Received MRI of Brain and Cervical Spine. Double enhancements of gadolinium used.
• Received MRI reports on December 18. Cervical showed two enhanced lesions in cervical spine
between C3-C4. Brain MRI showed several enhanced lesions in the white matter.
New Years Eve, December 31, 2006
• Regaining some leg strength. Sharp pains in fingers and feet seem to indicate nerve healing. Tactile
sensations returning slowly. Mornings and late evenings remain the best for activity. Afternoons and early
evenings are when pain and spasms are worst. Overall attitude getting lighter; more like myself again.
Although severe depression occurs for three-four hour periods, but terminates as quickly as it comes.
January 10, 2007
• I appear to have come down with an upper respiratory infection. Sore throat and inflamed sinuses. My
blood pressure has averaged 140/100 for three days. Heart rate between 100-125 BPM. This could be due
to use of Afrin. Afrin use discontinued. I called Kaiser neurologist, who advised me to call GP to handle. I
saw GP today, who prescribed Flonase to clear sinuses and Altenolol to lower heart rate and blood
pressure. First day taking Atenolol, heart rate reduced to 75 BPM, but blood pressure still at 140/100.
Hopefully with continued use, the blood pressure will return to normal.
January 16, 2007
• In Chicago for neurological evaluation with neurologist, Dr, Roman Balabanov. Score of 2.5 on the
EDSS scale. Next day I was evaluated by immunologist, Dr. Richard Burt at Northwestern University
Hospital. Based on rapidly progressive nature of my disease and the relative early stage, I was
considered a good candidate for the stem cell procedure. As I am double-insured, will begin process to
gain authority for procedure from either Blue Cross or Kaiser. Otherwise, my out-of-pocket cost will be at
least $90,000.
• Sporadic bouts of severe depression have been happening for past two weeks involving despair and
crying for no apparent reason,
January 30, 2007,
• Could not go to work due to fatigue and leg pain as well as tremendous daily depression. Heart rate
and blood pressure vacillating wildly. Went to ER. Was discharged and was told to contact neurologist for
Rx of anti-depressants and pain killers.
• Next day, called Kaiser neurologist. He was out of town. Asked to see back-up neurologist. Nurse
advised no back-up available. If emergency, go to ER.
February 2, 2006
• Call to Kaiser’s Member Services. Advised of difficulties with assigned neurologist. Advised I needed
to see about getting pain killers and anti-depressants as pain and depression were becoming too much to
handle. Also asked Member services to set me up with a new neurologist as assigned neurologist was
obviously incapable of treating my disease properly. Member Services made appointment with
Psychologist and Psychiatrist. Went directly to appointment and spoke to psychologist, who referred me to
a psychiatrist (who was also a neurologist). He prescribed anti-depressant (Wellbutrin).
February 5, 2007
• Saw Blue Cross neurologist, Christopher Bradley. After thorough evaluation, he advised to definitely
pursue a change from Betaserone to Copaxone as it was obvious from past performance that Betaserone
was not effective. Informed him of my intention to pursue stem cell therapy. He stated it may be promising,
but he would need to be more familiar with the procedure before he would advocate it. Advised him I would
forward all procedure and historical statistics to him for review.
February 8, 2007
• Went to ER again. Tremendous pain in all muscle groups as well as systemic spasm. Difficulty
breathing due to muscle spasms. Severe depression ensued. ER doctor gave IV of saline with morphine
and Ativan. Pain and spasticity reduced and I was released with a prescription for Ativan and Vicodin. I was
to take Ativan in addition to Baclofen. Only side-effect was from Vicodin if I did not eat first (vomiting).
March – April, 2007
• Prescription of Ativan helps a great deal. I have been working without much interruption due to illness.
At this time, both Kaiser and Blue Cross have denied coverage twice for the Hematopoietic Stem Cell
therapy. I appealed to the state Independent Medical Review Board. IMR three doctor panel denied
coverage of benefits on a 2 to 1 vote (two doctors against and one doctor approved), stating that the
procedure would not likely be of greater benefit than the standard treatment course that I am currently
partaking.
May 02, 2007
• Informed Dr. Burt of Northwestern Memorial Hospital that I will pay for the procedure out-of-pocket.
Schedule for testing and procedure was calendared to beginning June 4, 2007 and extend to July 31, 2007.
June - July 28, 2007
• Underwent the Autologous Stem Cell with High dose Cyclophosphamide. See Procedure Videos at
http://www.allyoumed.com/Procedure_Videos.html.
August - September, 2007
• Return home to San Diego. Lost 32 pounds. Mostly muscle mass. Very weak and tired. Strength
slowly returns in the two months after procedure. Old MS symptoms still present, coming and going in
cycles lasting days. Each individual symptom has it's own cycle. Sometimes overlapping. My local
physician, Dr. John Turla, had agreed to care for me using the written instructions of Dr. Burt. This involved
regular evaluations and monthly blood tests.
October, 2007
• Returned to work. I probably should not have returned so soon, but money was so tight, that I was
forced to work. It was all I could do to make it through each day, I was so exhausted. Fortunately, the old MS
symptoms appeared to be not a strong as before and my leg strength was slowly improving. Although even
minimal physical exertions caused pain and exhaustion.
November - December, 2007
• The MS symptom cycles slowly becoming shorter in duration and intensity. Leg strength slowly
improves. Depression episodes and foggy mind happen less frequently and are of shorter duration.
Attitude improves.
January - March, 2008
• New MRI in January showed no active lesions and the two lesions that were on my Cervical spine
were no longer detectable. The MS symptom cycles are flattening out. They are all still there, but they are
becoming less of a barrier to a normal existence. I am able to start taking on home projects and serve
more at Church. In February, I did come down with a bad case of Flu; which put me in the hospital for two
days. But my young immune system eventually kicked-in and by March, I had recovered. In February, I also
flew back to Chicago for the 6-month evaluation. The MRI tests results showed that the disease was in
remission. The evaluation reports summary from the neurologist, Dr. Roman Balabanov, showed that my
EDSS Scores were 2.5 in January of 2007, worsened to 3.0 in June of 2007, then improved to 2.0 at the 6-
month post procedure evaluation in February of 2008. These results show conclusively that this procedure
was far more beneficial than the standard of care; in contrast to the opinions of my insurance carriers and
the DMHC IMR Board.
April – May, 2008
• Cycles of MS symptoms continue to reduce in frequency and intensity. Leg strength increses
dramatically. Muscle mass in the legs has increased to almost pre-symptoms (2005) state. Able to stay on
my feet for several hours at a time. Although pain in legs and tiredness ensue afterwards. But these are
gone the next day. My workdays are back to normal with little fatigue or pain. My sleep patterns are
normalizing. Only rare instances of insomnia. I am able to take on more projects at home and church with
less fatigue. This is not to say that I have completely recovered to a pre-symptom state. Rather, it has been
a slow progression getting to this point. When under alot of stress, the MS symptoms come back with
strength, but the recovery has been quick; about one-two days.
June, 2008
• Cycles of MS symptoms seem to be getting worse with 100 mile per day drive to work and back. There
don't seem to be any new symptoms, just increasing exacerbations of the existing symptoms. Mostly more
spasticity, ringing in the left ear. My leg strength remains good, despite the spasicity. The spasticity seem to
be mostly in the trunk of my body. Some insomnia has returned as well. Bouts of depression seem to have
returned as well. I am still working every day and going to church regularly. I am still in better condition now
than I was in 2006 through early 2007.
July 20, 2008
• It looks like I am in the middle of what appears to be a full-blown relapse. Deep depression, spasticity
in the legs and trunk, high blood pressure with racing heart beats. My physical strength is still good, but the
symptoms I am experiencing are the worst since taking the procedure. Ironic that this is happening one
year to the date from when I had the procedure. These symptoms do not appear to be new symptoms, but
the same old symptoms coming back as bad as they were at their worst. I called the transplant nurse, Kate
Quigley, asking her about whether she thinks this may be a failure of the procedure and that the
demyelinization has started again. She advised that every patient's experiences after the procedure are
different and that the procedure did not do anything to affect preexisting lesions. As I have been having alot
of financial problems and work-related issues, my stress levels have been high. She said these may also
be contributing factors. So I should not assume that the procedure failed. We shall learn the answer when I
get the new MRI series results at the end of this month.
August 15, 2008
• Great News! The MRI of July 23 once again showed no active lesions. So I guess my use of the word
"relapse" was incorrect. What I have been feeling was not a MS relapse, but the result of the damage done
to my CNS previous to the procedure. Saw Psychiatrist as depression episodes still bad. Was given Rx of
Paroxetine.
August 30. 2008
• The exacerbations have reduced. I no longer have the depression episodes. I contribute this to the
addition of the new anti-depressant. But I do have some spasticity in the trunk of my body, just not severe.
Sort of in the background. My leg strength is slowly improving as well. I am able to stay on my feet for about
an hour now. Although standing in one place or in a sitting position (driving) for more than 15 minutes gets
the spasticity going.
September 18, 2008
• Heat makes the fatigue come on. Once that starts, I get a cycle-thru of symptoms (unrinary retention,
weakness, sluggishness). If I have insomnia, it's worse. The cycles are getting of shorter duration (2-3
days). And longer periods of feeling "almost normal)".
October 31, 2008
• Began to work from home (telework accommodation) two days per week. Still taking all my
medications (just not any MS drug, like Betaserone). I'm starting to see the muscles in my legs getting
larger. Balance is much better. Ringing in the left ear is still the only constant. I'm starting to be able to tune
it out for longer periods.
January 15, 2009
• The last three months have seen a slow, but meaningful improvement. Urinary retention problems are
still present, but to a much lesser degree. I am beginning to get my multi-tasking powers back, My mind is
not as sluggish. Spasticity in the trunk of my body is persistent, but bearable.
February 23, 2009
• Taken to ER via ambulance. Flu-like symptoms with alot of throwing-up. High fever (102.9 degrees).
ER doctor diagnosed Pneumonia. Out of work for three weeks. Saw Primary Physician, who reviewed new
tests and determine it was not Pneumonia, just a bad case of flu. I did not feel my MS symptoms during this
time, as the flu symptoms overshadowed them.
March 12-16, 2009
• Saw my Primary Physician. My cholesterol levels and triglycerides were high. New Rx to reduce
cholesterol. Returned to work on March 16. Oddly enough, after the flu symptoms went away, I felt stronger
than I have felt in almost three years. Leg strength improved. Muscle mass overall was denser than before.
My cognitive abilities improved. My ability to multitask at work improved. Short term memory improved. I
noticed all this, because the quality of my work markedly improved and I got more things accomplished in a
shorter amount of time than before.
April - May 16, 2009
• The improvements of March remain. I have not had a bad symptom cycle in two months. I pray that this
continues, and continues to improve. My life feels almost normal. I am still reminded daily of my MS
symptoms. But they have become a minor inconvenience to this point. The heat of the summer is coming. I
think that will be the true test of my recovery.
June 03, 2009
• Stressful event at my job caused MS symptoms to flare. Since November of 2008, I had been able to
telework from home 2 days per week. That accommodation was taken away today. My caseload was also
increased dramatically.
July 08, 2009
• Excellent News. My wife and I are in Chicago for a few days for the annual neurological evaluation. The
MRI's taken today showed that the remission remains stable. No active lesions. My cognitive tests showed
a marked improvement, as did my leg strength and overall neurological test scores. While the MRI's still
showed extensive lesions, some healing of my Central Nervous System has occurred. As has been stated
previously, this procedure is not a cure, but meant to stop further progression. We thank God so much for
these improvements.
July 14, 2009
• The stress from my increased workload, and the 100 miles, fives days per week drive, have been
taking their toll on me, both physically and mentally. I made a final request for an accommodation from my
employer today. My request was rejected. I'm at a point now when I must make a choice between
continuing improvements to my health, or to continue working under the conditions set by my employer. It's
a personal and financial decision that we must pray about.
Summary and Comments:
Looking back at my health history, the diagnosis of MS explained a lot. I have had back problems and
numbness in the extremities on and off over the last 20 years. Neither chiropractic treatments nor
muscle relaxants seemed to help much. But as these problem were sporadic in occurrence, I did not
think much of them.
However, the continuous attacks of August, 2006 through April 2007 were the most acute in severity
and disability to date. The pain and numbness to the abdomen, lower back and buttocks, arms and
hands, leg stiffness and weakness, severe episodes of depression, light-headedness, physical
weakness, fever, sore throat, insomnia, sinus pressure and nausea have been chronic and cyclical
throughout the duration of the relapse. The Betaserone course was not effective. I changed to
Copaxone. Baclafen, Ativan and Wellbutrin with ibuprofen and muscle rub (Myoflex) have been the most
effective drugs for some symptomatic relief. For sleeping, I take Tylenol PM with occasional
Temazepam. Unclear if high blood pressure and increased heart rate were due to MS or a combination
of all the drugs I took for MS symptoms. I needed to monitor Blood Pressure carefully. Leg strength and
ability to walk/stand easily was sporadic on a daily basis. I still attempted to continue to work, but that
became more difficult as time went on. It became clear to me in late 2006 that the only way I was going
to get quality treatment was to manage my own care.
I recommend to anybody with this disease to do your research, and take control of your own health
care.
| Brian's Symptoms Timeline |
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| Contact brian@allyoumed.com |
