This Is MS Multiple Sclerosis Knowledge & Support Community

First a little context / history.

I have had 3 CCSVI procedures, with little to no relief. I have tried ABX's, I was initially on REBIF, which failed for me. I have had MS Symptoms for around 15 years, with a diagnosis of MS for the past 8 years. I have two neurologists, with one saying SPMS, and the other saying RR. My EDSS is about 4.0 or higher. I can walk just over 1km. My balance is bad, I suffer from Ataxia and balance the most, with tingling in my feet.

Yesterday I had my first dose of Gilenya, in the morning, followed by 6 hours observation. They said my heart rate was pretty much unaffected, and if anything, there was a slight drop at hour 3, but it was back at hour 4.

So today is the end of my second day, and I cannot say I have noticed any changes or side effects.

HI friend my name is seeva from SYDNEY my neurolist telling me that because i have SPMS he dosen't want to give me Gllenya. Only for PWRRMS the PBS comity recommened. i do not think i have SPMS i have my m.s since 1998. Afiend of mine m.s lady had m.s 25 years she is on Gilenya and found good improvements I am only using LDN drug for my m.s Please let meknow your DR details so that i can see him soon and get the script for Gilenya I tried both AMPYRA for a months each. no improvement but my walking was effected please help me my DR from westmead m.s clinic
regards
seeva

Seeva,

The Dr that prescribed me my script for Gilenya also has said that i am SPMS, and i think is the exact same Dr that will not prescribe it for you; so you already have his details.

I have another neuro (in Newtown) who was adamant that I am RRMS, so I am sure I could also get a script from him as well. Which makes me think you could maybe get yourself a second opinion. But the reason that the first Dr hasn't prescribed it for you, is because he does not think it will be effective.

I don't think it has been effective for me.

CureOrBust wrote:Seeva,

The Dr that prescribed me my script for Gilenya also has said that i am SPMS, and i think is the exact same Dr that will not prescribe it for you; so you already have his details.

I have another neuro (in Newtown) who was adamant that I am RRMS, so I am sure I could also get a script from him as well. Which makes me think you could maybe get yourself a second opinion. But the reason that the first Dr hasn't prescribed it for you, is because he does not think it will be effective.

I don't think it has been effective for me.

Thanks for you reply My DR. IS STEVE VUCIC from westmead m.c clinic After the holiday i try and see DR.Michael Barnett at M.S Clinic in camperdown where prefesor john Pollard working. I think you may be know him. few my m.s friends have same problem from DR. steve and want to go to different dr, a lady m.s friend taking Gilenya told me her walking , balance must improved no need any aid for walking now, she had m.s for last 25years so friend don't giveup. the hope on Gilenya, thanks for your info.
regards
seeva :roll: