Greetings to all,



I deeply apologize for the delay in updating my progress after the procedure ended last July 27, 2007.
Leaving Chicago on August 02, 2007 to fly home to San Diego was very difficult as I was extremely weak. I
would tire very easily and had to stop to rest many times. Thank God my wife, Charo was there to assist
me. The flight itself was uncomfortable in so many different ways. But it was good to get home again. Here
is an account of my experiences from August 01, 2007 to October 27, 2007.



The nausea from the chemo had passed and I could eat, just not normal quantities of food. When I
weighed myself at home I found that I had lost 30 pounds during the procedure. I was not sleeping well,
awakening often at night. Even minor physical exertion, like walking upstairs, caused me to sweat heavily.
My legs and arm had lost considerable muscle mass. As my immune system was that of a newborn baby,
I was to avoid crowded places, animals, and all kids. I could see friends a couple at a time. I get blood
drawn every week or two to ensure my counts are getting back to normal. So far, so good. Still no hair,
though. I think I'll just keep it like this.



A few days after I got home, my old MS flare-ups started. I was advised by the Immunologist that this would
likely occur as my body just went through a great deal of stress from the procedure. (And those of you with
MS know that it doesn't take much stress to trigger a relapse.). This time, however, all of the symptoms
from past relapses occurred at the same time (with the exception of Optic Neuritis, that did not recur). The
symptoms were spasms and pain in all extremities as well as the trunk of my body to the neck, loss of
sense of balance, and severe lower back pain, ringing and buzzing in both ears, and urinary problems.
Stiffness in the leg muscles and severe fatigue. The most debilitating of the flare-ups were bouts of deep
depression. If you've had real depression, you know what I'm saying. But my wife and mother-in-law made
me as comfortable as they could and took care of my daily needs.



The doctor told me I would improve in overall health in 7-10 weeks to the point where I should be more
functional (strength returns, MS flare-ups would recede, etc. He explained it to me like this: "What you went
through physically with the MS and this procedure gave me something similar to Post-traumatic Stress
Syndrome. He may have been right in my case.



August was the bad month. But in September I started getting my strength back. The MS flare-ups were
still there, but they moved more into the background, if you know what I mean. The heat in September didn't
help as they tended to make the fatigue stronger in the heat of the day. But overall, my health improved
steadily in September. I wish I could show you all a graph as the improvements were not in a straight line.  
They came and went in cycles. Some days would be good days and some days would be bad days. Some
days the flare-up cycle were strong. Some days I felt like my old self again.



By the end of September, I stubbornly carried boxes and moved furniture. That one weekend set me back
into the bad cycle and it lasted for weeks, into October. I was heavily scolded by my wife and doctor to not
do anything like that for at least a year.



I have started work again as an auto claims adjuster for the same company I worked before. They were
gracious and flexible to my needs. State Disability (which I was on from May through September) payments
do not pay a living wage. But I was glad SDI was there, It was better than nothing, Going back to work is
another transition that was a bit difficult, but I think it was good for my mind to be focused on something
else.



Now for the Prognosis that everyone was waiting for:



Has the procedure shown any benefit yet?

Do I expect to be cured of MS completely from this procedure?



Since it's barely been three months since the procedure, I've not seen any definitive improvement. But the
timeline for true benefits to appear is 12-18 months. So I have a ways to go before I know if current
flare-ups disappear and no new lesions appear.



You see, that was the rationale to do this procedure. My EDSS Score was 2.5. I was a good candidate. I
knew there was a possibility that lesions already established might heal; and they might not. Depending
on the amount of damage done to the nerve. However, my true motivation for doing this procedure was the
chemo I went through destroyed my immune system, thus destroying the malfunctioned immune memory
that was attacking my central nervous system. This all means that the chances are very good (over 80%)
that there will be no further MS attacks. I can live with the disabilities I already have. I do not want to add to
them.



MS being a progressive disease, the prognosis will always be toward further disability and loss of quality
of life. I did this procedure because it was my only hope to be able to provide a quality life for my family.
Otherwise, my wife could look forward to years of my progressive physical deterioration. I would not do that
to my wife if there was any way to stop it.



Until then, God Bless.



Brian Tilaro