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Old 02-15-2009, 11:54 PM #1
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dmplaura dmplaura is offline
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Join Date: Jul 2008
Location: Moncton, NB, Canada
Posts: 2,195
15 yr Member
dmplaura dmplaura is offline
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dmplaura's Avatar
 
Join Date: Jul 2008
Location: Moncton, NB, Canada
Posts: 2,195
15 yr Member
Thumbs up I'm done

Copaxone.

I've had enough. Not even 1 year. I did a lot of thinking about my situation, and did a lot of talking to those around me, including my family.

I've been eating a low fat diet since last July (think Swank diet, only not as hard core, but close enough), sleeping well, exercising, quit smoking... my MS symptoms are mild. As of March 5 this year, it's my 1 year anniversary of being diagnosed, but it's also my suspected 6th year of living with this disease. My neuro hinted that 5 years was a conservative estimate at diagnosis time.

In any event... I suffer from pretty atypical MS symptoms, and they're sensory. Mostly headache, and this burning mouth crud. Has either improved? No. Are they controlled? Yes, not satisfactorily if you ask me, but we're working with what we have (pain specialist with his 2-3 year wait is out of the question at this time).

Anyways, this is about Copaxone. I had to take an arms vacation. After not missing but 1 shot since May 10, 2008. I can't not inject into muscles on my arms apparently, as we discussed. I tried the 45 degree angle on my thigh injecting, and ended up with an enormous bump/welt. I injected as I always have on my other thigh, and was virtually unable to walk on that leg for 5-6 hours, and in terrible pain.

In a 2 week span, my body literally, in various ways, be it unable to use limb or huge white welts, began just overall rejecting this drug.

Do I think Copaxone has helped me personally? I'll be honest.

No.

Do I think my diet changes, exercise and quitting smoking, among other lifestyle changes, have been keeping me in remission, save for the headaches (which have plagued me since the dawn of time)?

Yes.

So my tearful mother yesterday said, "Laura, are you honestly going to finish that box of needles?". I sat in silence for a bit, and then I said, "No, I'm not". I had fully intended to. But when your own mother is almost crying on the other end of the phone, you definitely rethink the value of 20 more agonizing shots.

So that's my update. I'm still eating well, have not missed 1 day of exercise since Jan 1 (and I was exercising well before that), doing well at work and overall I'm happy . Even with the headaches and burning mouth pain. I can't expect to be 100% symptom free with MS. I'm realistic
__________________
2004 to present - Trigeminal Neuralgia
2007 to present - Burning Mouth Syndrome
March 2008 - Multiple Sclerosis DX
05/2008 - Relapse
05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
April 7/14 - Raynaud's Syndrome DX
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