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Tuesday, August 6, 2013 2:39 AM | Maria Cristina Coutinho Vilaça Volg link

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!