I have read several published testimonials regarding the personal experience
of many members on this social network. I have decided then to give
my testimony as a physician as well as a person that has MS, hoping that
my experience can help someone.
I learned that I was a carrier of MS over twenty years ago,
when I presented double vision. Today I'm sixty one years old and my
EDSS level is 7.5.
Initially it was prescribed to me oral corticosteroids and when I had outbreaks
it was prescribed a pulsetherapy with synthetic methylprednisolone
for three to five days, intravenously and in hospital regimen,
following with oral corticosteroids (prednisone), reducing the dose gradually.
At this time the disease regressed without apparent sequel.
During these years I have presented various symptoms such as:
paresthesia, spasticity, fatigue, numbness, cold legs and other symptoms
that you have knowledge.
I also presented myofascial pain in the dorsal region in a degree that
it was necessary to use opiates. This pain me accompanies until today,
but in a smaller degree.
During this period only my husband and kids knew of my diagnosis.
Although I have a large family (father, mother and five siblings) I chose
not to inform them so not to generate greater suffering.
About 10 years ago I started to have strength deficit more pronounced
in the lower left member, was when I started doing Interferon.
I remained using this medication, because there wasn´t any other available
by then. During the first three months of use of this medication I had
an intense fatigue, but despite of it I fought with the power of my mind
to stay working guarding with me the huge sacrifice that it represented.
After a few months the fatigue related to the use of this medication
was gradually reducing. I remained with this medication for about three
years while my situation kept deteriorating.
By this time there was no other medication available indicated to my case.
My condition kept deteriorating when arose the possibility
of using Natalizumabe. I have used this medication for about 4 years and
had a huge gain with the stabilization of the disease in the EDSS
level of 7.5 (the same I was when I started this treatment).
During the use of this medication haven’t had any outbreak or side effects.
I had also a disorder called urination urgency,
but after the use of Natalizumabe I have had effective control of urination.
The doctor who treats me made ??a comparative study
of the resonances obtained before and after the use of Natalizumabe and
it was found that there was no worsening.
Today there are medication options (not available 10 years ago) that could,
in some cases, prevent the development of the motor deficit sharp,
as in my case.
If I had started Natalizumabe when I was still walking, probably
the disease would not have evolved to this degree of disability that I meet today.
My decision to treat myself in India (as mentioned in a previous blog post)
was made after having a blood test performed by the laboratory
that manufactures this medication and having found that I was a carrier
of latent virus and therefore likely to have a complication
multifocal leukoencephalopathy (PML ) that in most cases is deadly.
All medications that I received and used were free and provided by
the Health Department of the state Pernambuco.
I live in Recife (Pernambuco) in the northeast of Brazil.
Any Brazilian has the same right to receive this benefits.
I went to India and there I have made venoplasty and implantation
of stem cells. When I returned, I have made several changes
in my physiotherapy, increasing the time and changing exercises
( some of the exercises are mentioned in a previous blog post).
As the etiology of this disease is unknown, I suggest to everyone asking
their neurologist (who accompanies the case) to order all tests that assess
the metabolism. In my case it was necessary to fix the found problems
with medications. After this correction my condition has improved.
I'm currently doing physical therapy: weight, daily bike, trampoline, TENS
and FES. I take sunbathing everyday for about 30 minutes ( for vitamin D).
I take vitamin D3 in sufficient quantity to maintain the highest
level within the normal rate. I have my blood tested every two months
to monitor the use of the D vitamin. I also use Niacin 1 tablet per day.
I also use other drugs to control spasticity and myofascial pain.
I´ve been accompanied by the same doctor for over these 20 years,
who is an excellent professional, updated and participates
in all world congresses of Eminence. Right now her suggestion is that
I start on Fingolimod.
To use this medication I have performed several cardiac tests and
retinal tomography to assess the risks in using this medication.
Probably next month I'll be taking this medication in order to prevent
the progression of the MS.
Keep in mind that all this medication were prescribed by a doctor that
know my disease for a very long time. Each patient is different,
so it's very important ask your doctor. The idea is for you to keep in mind
that there are options and you need to keep searching.
Never give up search for alternatives!