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07-30-2016, 03:37 AM #16
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- Jul 2005
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- Connecticut
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07-30-2016, 04:51 PM #17
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- Sep 2007
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- North Carolina
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- 166
I didn't go on a DMD for 3 years after first sympotm. I wasn't DX'ed and as symptoms stacked up I avoided doctors like a plague. I had the internet and knew what all the symptoms would add up to so I just didn't go. Finaly got a relapse bad enough I couldn't ignore it and went and was diagnosed almost imediatly did a MRI and Spinal tap to confirm and yep MS.
Neuro put me on Avonex which I stayed on 1 year but had 2 relapses while on it and between working full time and spending my weekend with "flu like" symptoms I was wiped out. Decided cure was worse than diseases and told neuro. She said try Betaseron it's not as severe as Avonex for the side effects. Was on that for 3 months had another relapse and had traded a whole weekend of "flu like" for every other day of it including work days. I quit it as well. Neuro got mad and fired me.
Found a new neuro and he told me about a study for a new once a day pill so I got in the clinical trial for Finglomod (Gilyena) and was on that 2 years. Then an insurance snafu kept me off it about 3 months then back on, I have been on it ever since. My progression is much slower than when I was taking nothing or Avonex or Betaseron and I seem to tolerate it well. I just changed jobs so I expect another insurance snafu in the near future so I will be off it a few months. I will decide at that point if I want to resume or not. Gilyena still has side effects I would love to be free of but it will depend. If I have 2 relapses while waiting for the new insurance I'll be back on ASAP if I have no relapses I will probably stay off. I'll let you know how it goes around November or December.Rise up this mornin, Smiled with the risin sun, Three little birds Pitch by my doorstep Singin sweet songs Of melodies pure and true, Sayin, (this is my message to you-ou-ou
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02-11-2017, 03:38 PM #18
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- Feb 2017
- Location
- USA
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- 6
Off meds for now
I was diagnosed in Sept 2013 and started on Copaxone, at my request, a few months later. The neuro I had at the time was trying to push Avonex, but I didn't like what I had read about it. A few months later, I ended up getting the awful side effect of Copaxone that makes you feel like you're having a heart attack, and I had that several days in a row. I then developed a rash and was told to stop taking the medication.
My next choice was tecfidera, which gave me terrible stomach pains and nausea. I had issues with insurance at the time and had to stop taking it. I tried it again 2 years later, ending up with the same stomach issues and a brand new rash all over my arms. So I stopped taking it.
I've had 3 relapses, including the one that lead to my diagnosis. The last 2 were only 5 months apart, this past April and September.
I've found that changing my diet a bit and using essential oils for my leg pain works for now. Along with vitamin D, that's all I'm planning on doing until I get worse or a new med comes out.
My husband and I are planning on starting a family in the next couple years. I'd like to be able to wait until after kids to start playing guinea pig with any newer medication.
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02-12-2017, 12:33 AM #19
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- Mar 2012
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- King of Prussia, PA
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Hello fellow MSer ! I am going to be a pain and tell you that it is not a smart thing to ignore this disease by not medicating ! I did exactly that and began a slide down disability hill very quickly !
I have one suggestion for you. Lemtrada ! That's all I have to say ! Good luck !
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02-13-2017, 04:15 PM #20
I don't take any DMD's. I was diagnosed in October 2002 and avoided what was available because of the side effects.
I made some modifications to my diet and started supplementing with vitamins. I have had a few minor episodes along the way but am happy with my decision.
Doctors will push the meds and for some people it may be the way to go but not for everyone. There are tons of resources available at your fingertips all from the comfort of your home, dig in.
Whether or not anyone decides to go on the DMD's, they must take care of their body. Avoid the sugars and grains, eat orgainc meats and veggies if you can afford it.
Drink Coffee. YMMVCrescent City Classic- April 20, 2019....didn't make it..
IBJJF Las Vegas- August 21-24, 2019
Tough Mudder Atlanta- November 9, 2019
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02-24-2017, 02:13 PM #21
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- Jun 2006
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- United States
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- 29
If I knew then what I know now....
I had a neuro that referred me to an MS specialist an hour away. Very first meeting, he hands me a list of all the meds I could switch to with no real thoughtfulness behind it. I was on Betaseron for years and pretty stable.
My husband and I called him Dr. Feelgood bc anything I ever brought up he'd say, I could write you an Rx for that!
Long story but ins. Dropped Betaseron, swirtched to Extavia, tripping and walking troubles started (still with old neuro), I insisted it was the switch, doc pushed to get back on Beta successfully, almost instant better again. Meanwhile I have MRI have ONE new lesion, Dr. Feelgood pushes the list in front of me and says, " you could risk getting more lesions, it looks like it lost efficacy."
Lured by the siren song of oral medications, I switched to Gilenya. And it's been awful ever since. N ow I'm on Tysabri, but I feel even worse. Who knows? But if I knew then what I know now, I would've taken the risk of staying on Betaseron. Being generally stable (literally as well as figuratively!). means a lot!!!! I even would stay on Gilenya bc it looked as though I was adjusting, and I started to have good days but again, MRI looked way worse.
Damn Dr. Feelgood. He's got too much in his arsenal and willing to take the risk.
Now I'm wondering if I should try to back on Betaseron. Who cares about a stupid poke? But maybe it's too late.