Hi I am from Australia and new to this forum. I have had MS for 7 years and have struggled to deal with it.
I have two children aged 9 and 7 and both me and my partner work full time. I research all the areas of MS and the new medication and treatments. I am about to see a new neurologist that is only a specialist in MS and I hope this helps.
It took few years for any real signs to show but I now have difficulty walking and standing. I refuse to use a walking stick as I feel that people will look and laugh at me. I see a therapist every few months to help with my anxiety and panic attacks. I have also been doing yoga and muscle exercises every few days but I would like to do more.
I am currently taking Rebif but have been looking into taking Gilenya, but after research on this medication I am unsure if I should take it. I am also looking into the CCSVI treatment.
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Re: New to ThisIsMS
Welcome.gingerfish wrote:I am currently taking Rebif but have been looking into taking Gilenya, but after research on this medication I am unsure if I should take it. I am also looking into the CCSVI treatment.
Is Rebif working for you?
I have tried Rebif, and for me it was worse than disease. I recently started Gilenya and have had no noteable side effects or reactions, however, I cannot truly say it is helping either.
Was there any specific Gilenya side-effect that concerned you?
By your statement "looking into" I would assume you mean getting tested. That I would recommend most certainly. As for treatment, you can always decide based on the results, they may find nothing.
I have been treated twice in Australia (in Melb and Sydney), and also in the US by Dr Sclafani; and again no stand out benefits.
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Re: New to ThisIsMS
Thank you for your replies. I have looked at adjusting my diet but there is alot to be removed.
As I work in an office, I have been trying to sit outside for my breaks and lunch. To get Vitamin D.
The rebif seems to be okay and probably would be working better if I had been taking it all the time. I haven't missed a dose for awhile.
My issue with the Gilenya is all the side effects. I understand that all medication has side effects but they don't know what happens after 2 years of taking this medication. The new specialist that I am seeing works at the hospital where Gilenya was also tested so will what they say about it.
As I work in an office, I have been trying to sit outside for my breaks and lunch. To get Vitamin D.
The rebif seems to be okay and probably would be working better if I had been taking it all the time. I haven't missed a dose for awhile.
My issue with the Gilenya is all the side effects. I understand that all medication has side effects but they don't know what happens after 2 years of taking this medication. The new specialist that I am seeing works at the hospital where Gilenya was also tested so will what they say about it.
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