Written 01.22.14 –
I am Lisa Dasis, a 52 year old mother of two grown children
and grandmother of four wonderful grandchildren. My husband and family are so
supportive of me especially since being diagnosed with Multiple Sclerosis back
in 2004.
and grandmother of four wonderful grandchildren. My husband and family are so
supportive of me especially since being diagnosed with Multiple Sclerosis back
in 2004.
Receiving my diagnosis was not an easy process as it took
many years and several incorrect diagnosis to get to that point. You would
think being a Registered Nurse would have helped me with ascertaining it, but
as many of you know many symptoms would come and go with different durations.
Often when I would finally get into a physician’s office, there was not a
symptom present for them to observe. There is a family history of Lupus so when
receiving this diagnosis, there wasn’t much of a surprise. Many symptoms of
Lupus mimic MS, but as time marched on and everything started to not only
increase in duration but a lot of new problems started to appear, I started
questioning if something else could really be going on.
many years and several incorrect diagnosis to get to that point. You would
think being a Registered Nurse would have helped me with ascertaining it, but
as many of you know many symptoms would come and go with different durations.
Often when I would finally get into a physician’s office, there was not a
symptom present for them to observe. There is a family history of Lupus so when
receiving this diagnosis, there wasn’t much of a surprise. Many symptoms of
Lupus mimic MS, but as time marched on and everything started to not only
increase in duration but a lot of new problems started to appear, I started
questioning if something else could really be going on.
My career at that time was an orthopedic surgical nurse which
required me to hold extremities and pass instruments to the surgeon. This job
required a great deal of physical strength both in holding extremities and
standing for long length of times. It became impossible for me to manage this
as my condition deteriorated, so I found myself moving into positions that took
less physical strength but more mental stamina. This too became an obstacle for
me when the cognitive disorders appeared. Nursing is one area where mistakes
cannot happen, so as it became a major problem I pushed hard for a referral
outside my small community for a second opinion. In the back of my head I
started to suspect Multiple Sclerosis and had mentioned it to my doctor. He
felt that there was a small chance of this being possible but fortunately, he
referred me to a MS Specialist/Researcher in Nashville, TN.
required me to hold extremities and pass instruments to the surgeon. This job
required a great deal of physical strength both in holding extremities and
standing for long length of times. It became impossible for me to manage this
as my condition deteriorated, so I found myself moving into positions that took
less physical strength but more mental stamina. This too became an obstacle for
me when the cognitive disorders appeared. Nursing is one area where mistakes
cannot happen, so as it became a major problem I pushed hard for a referral
outside my small community for a second opinion. In the back of my head I
started to suspect Multiple Sclerosis and had mentioned it to my doctor. He
felt that there was a small chance of this being possible but fortunately, he
referred me to a MS Specialist/Researcher in Nashville, TN.
Within 15 minutes of my exam with this physician, he said,
“I believe you have MS and feel it is located primarily in your neck.” A MRI of my head and neck, spinal tap, and an
Evoke Potential test were all ordered and results given to me within two weeks
of my initial visit. The primary diagnosis was RRMS and was immediately put on
Betaseron. Within two years I was told that I had Progressive MS and that the
medication I was on wasn’t working. My EDSS score had gone from a 5 up to a
9.7, was in a wheelchair full time, loss of control of bladder and bowels,
overwhelming fatigue, weakness, and experiencing major slurred speech and
cognitive disorders. My physician called my husband and me in and said that
there was a small window of opportunity to turn things around. He had found a
medication that had worked very well over in the UK for several years and
wanted to try this on me. This medication was called Campath, or also known Alemtuzumab, now
labeled Lemtrada.
“I believe you have MS and feel it is located primarily in your neck.” A MRI of my head and neck, spinal tap, and an
Evoke Potential test were all ordered and results given to me within two weeks
of my initial visit. The primary diagnosis was RRMS and was immediately put on
Betaseron. Within two years I was told that I had Progressive MS and that the
medication I was on wasn’t working. My EDSS score had gone from a 5 up to a
9.7, was in a wheelchair full time, loss of control of bladder and bowels,
overwhelming fatigue, weakness, and experiencing major slurred speech and
cognitive disorders. My physician called my husband and me in and said that
there was a small window of opportunity to turn things around. He had found a
medication that had worked very well over in the UK for several years and
wanted to try this on me. This medication was called Campath, or also known Alemtuzumab, now
labeled Lemtrada.
My first dose started in January of 2006 which I received in
his office by I.V., with each dose lasting about 5 hours for 3 days. The first
year after taking it, my blood work indicated it was working but I really didn’t
see an improvement with my condition. The second dose was given a year later
following the same protocol as before. Once again my blood work showed it was
working but this time there was enough improvement that I was able to get out
of the wheel chair, and had control of both bladder and bowel functions. By the
end of the second year I only need a cane to assist me with ambulation. We
repeated the 3rd dose in January of 2008; both my husband and I
where totally blown away with how my body responded to this dose. By the summer
of that year I was walking without any assisted devices, there were no
exacerbations experienced, and it was the closest to feeling like the person I
had once remembered. Taking advantage of this, I began walking daily and
started an exercise regime.
his office by I.V., with each dose lasting about 5 hours for 3 days. The first
year after taking it, my blood work indicated it was working but I really didn’t
see an improvement with my condition. The second dose was given a year later
following the same protocol as before. Once again my blood work showed it was
working but this time there was enough improvement that I was able to get out
of the wheel chair, and had control of both bladder and bowel functions. By the
end of the second year I only need a cane to assist me with ambulation. We
repeated the 3rd dose in January of 2008; both my husband and I
where totally blown away with how my body responded to this dose. By the summer
of that year I was walking without any assisted devices, there were no
exacerbations experienced, and it was the closest to feeling like the person I
had once remembered. Taking advantage of this, I began walking daily and
started an exercise regime.
The following 4 years I went without taking another dose of
Lemtrada.
I felt amazing and was walking up to 4 miles a day. Two of the three years there wasn’t a flare-up
that required a intervention. My MRI’s had improved a great deal and it had
been so long since I remembered feeling that good that I started thinking about
possibly returning to work. By the end of the 3rd year though, a
treatment for an exacerbation was needed. Year 4 was very difficult for as my
condition started back sliding. There were more “bad” than “good” days which
required Solumderol as treatment. My doctor and I discussed my next
dose of Lemtrada but it wasn’t available for purchase or through a study.
It had been taken off the market, which really surprised me because I had heard
over the past couple of years that it was close to being FDA approved.
Lemtrada.
I felt amazing and was walking up to 4 miles a day. Two of the three years there wasn’t a flare-up
that required a intervention. My MRI’s had improved a great deal and it had
been so long since I remembered feeling that good that I started thinking about
possibly returning to work. By the end of the 3rd year though, a
treatment for an exacerbation was needed. Year 4 was very difficult for as my
condition started back sliding. There were more “bad” than “good” days which
required Solumderol as treatment. My doctor and I discussed my next
dose of Lemtrada but it wasn’t available for purchase or through a study.
It had been taken off the market, which really surprised me because I had heard
over the past couple of years that it was close to being FDA approved.
March 2013, I received my 4th dose
through a study by my physician. This dose didn’t work this time by evidence of
additional lesions on my MRI compared to the one performed before the dose was
given. I have also been experiencing a great deal of weakness, fatigue, falling
episodes, cognitive problems, and several other symptoms that have not
responded even to Solumderol. It has been a difficult year both with living
with the active MS and being disappointed with the outcome of my last
treatment. My doctor and I feel that length of time that we had to wait for
Lemtrada to be available again, as a “study” drug that it could take additional
doses for my body to respond as it did before. My next dose is scheduled this
February and must say that I am excited and hopeful for a positive outcome. My
faith in this medication is extreme and can’t help but be excited on how much
it will help others.
through a study by my physician. This dose didn’t work this time by evidence of
additional lesions on my MRI compared to the one performed before the dose was
given. I have also been experiencing a great deal of weakness, fatigue, falling
episodes, cognitive problems, and several other symptoms that have not
responded even to Solumderol. It has been a difficult year both with living
with the active MS and being disappointed with the outcome of my last
treatment. My doctor and I feel that length of time that we had to wait for
Lemtrada to be available again, as a “study” drug that it could take additional
doses for my body to respond as it did before. My next dose is scheduled this
February and must say that I am excited and hopeful for a positive outcome. My
faith in this medication is extreme and can’t help but be excited on how much
it will help others.
I write a blog about MS call MSlisaSAYS.com and have spoken to several
individuals who have taken Lemtrada and are who are just now taking it for the
first time.
The responses from those who have taken it before are all positive and for
those who are taking it now for the first time or who are hoping to be treated
with it in the future, I want you to know how much it has been my miracle drug
and hope your outcome is as great as mine.
=======================
In response to the many who need an option for another MS medication, I posted a petition online several days ago, that asks the FDA to reconsider their decision to deny this medication in the USA. Can you all imagine this?
Being denied in the USA – YET APPROVED everywhere else in the world.
Why is this?
Please help LISA and Hundreds if not thousands of others, to have another medication Option in their tool-chest.
I for one, have nothing to gain from Lemtrada being approved. Not financially and not by use of the medication.
I just believe in Choice and Options for those affected by MS.
This is why I created my petition.
Please click the link – read and if you can, please sign the petition as it reads…
– thank you — Regards, Stuart
Disclaimer: The information shown above is the biography of one patient and the opinion of another.
If you ave any question about Lemtrada – please contact your healthcare provider
……..
To comment – click the comment link shown below
…….
Share our Articles with others
…….
Share our Articles with others
.
Visit our MS Learning Channel on YouTube: http://www.youtube.com/msviewsandnews