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Have been taking Gilenya (Fingolimod) .5 mg. once a day for approx. 5 years. The 24 months, I have been experiencing MS flares every 4-6 months. New lesions on both the brain and spine. Due to new lesions presenting in new areas of the brain and spine, I'm experiencing symptoms/issues I previously had not. Recently, needed a Foley catheter after not being able to vacate my bladder within 24 hrs. This last year the Hospital Neurologist and ER doctors that now recognize me, all agreed I needed to… read more
@A MyMSTeam Member You know what’s scary to me? The fact you have a neurologist who 1) didn’t change your MS treatment long before now, say after the first relapse, second tops; and 2) they’re supposed to be the expert and offer suggestions to you based on what they’ve witnessed first hand over the years not just ask you for your input. Did they at least offer options? My neurologist watches very closely what’s going on with me and how my medication is working. I’ve had to fight to keep taking my Aubagio; until we found it I was having relapses every April and October like clockwork, each leaving physical damage I still haven’t recovered from. I went through Copaxone, Tysabri and Gilenya all within a three year time period until Aubagio. This month it will be four years relapse free. Why are you still with that neurologist? Seems it’s time to seriously consider finding one who cares more about you and has a genuine concern for your well being. If this happened to me, I’m sorry but I wouldn’t have waited to have five relapses for my doctor to say anything about changing MS treatments. I would have said something after the first one if she didn’t say anything first. You see you always have to your own advocate and stand up for yourself. I always make a list of questions and things that happen between visits so I can discuss them, if it’s something that can’t wait I will call for advice on what to do next.
@A MyMSTeam Member - thank you for your input. I struggled with misdiagnosis for 2-3 years before finding this Neurologist that diagnosed me 5 years ago. When I saw him 5 years ago, I could barely walk and was experiencing extreme mobility issues. I agree regarding medication side effects and am in the process of seeking another opinion.
@A MyMSTeam Member - I hear ya and appreciate your feedback. I am in the process of finding a new MS specialist, but as I'm sure you know, it takes time. Finding someone new, compatible and qualified takes time.
A doctor that allows a patient to continue on a dmd for over 2 yrs when he knows that it is not working (new lesions are reflective that the dmd is not working) is not much of a doctor. If you can, I would seek another opinion. Every medication has side effects (even an aspirin). Having lived with MS officially for 22 yrs and unofficially for over 35 -- I can say with certainty that I will take the side effects as opposed to the long-term irreversible damage MS does.
@lFitz totally agree with Debbie. My doc went though all of the meds with me telling the mild to severe side effects. I decided on Gilenya after being on Copaxone for 17 years. I decided I could live with the side effects and so far I think I'm doing ok on my current meds.
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