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Old 08-22-2012, 07:50 AM #11
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Nuvigil killed my appetite and I lost 5 pounds in a week. Rebif did ok. Gilenya helped with the balance and reduced fatigue. Provigil doesn't seem to increase or decrease fatigue. Gabapentin reduced my balance and I fell more than usual. I've only had 2 Tysabari infusions so the jury is still out.
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Old 08-22-2012, 06:09 PM #12
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I take baclofen for spasms and amitriptyline for break thru pain and sleep. I was taking baclofen 20mg a day and then had to increase it to 40mg a day, and now Im at 40mg 3 times a day. Sapsms are just not being controlled well anymore. I take a 50mg amitriptyline at bedtime everynite. Neuro said he would give me something for the tremors, but Im not big on pills, wont even take vitamins, so I said no. Maybe if the pain increases, more pills will appeal to me.
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Dx RRMS April 1992
Yearly flares from 92 to 11
MS induced seizures 2002
Flare Oct 2011
Flare Dec 2011
Left disabled after 2 previous flares
Betaseron '02, Copaxone '12, Tecfidera '13
(allergic reaction to all)
No longer taking any MS therapy meds
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Old 08-22-2012, 08:55 PM #13
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Most effective: Nabilone - for pain, hands down
Clonazepam - also for pain (burning mouth syndrome, very small dose works for me)

Least effective: I could give a laundry list of all the anti-convulsants, anti-depressants, misc. medications I tried along the way thus far for symptom management, but there's so many I won't even get started lol.
Copaxone - Not into a 30% (if even) *chance* of MAYBE slowing progression. Not into designer drugs or filling the big pharmas pockets. Nor did I enjoy the nasty side effects.
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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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Old 08-23-2012, 08:31 PM #14
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Klonopin, Propanalol, and Magnesium. Klonopin reduces burning and electric sensation to very low (small dose). Propanalol keeps heart at a nice rate and regular (not necessarily an MS symptom). Magnesium stops leg jerks and spasms at least 95 % but I must have it every day. EVERY DAY. Over the years added B1 and Vitamin E complex to magnesium to further reduce jerks and spasms (myoclonus).

Bad pills for me? Baclofen, Zanaflex, all anti-depressants, many more.
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Old 08-24-2012, 04:14 PM #15
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I haven't been impressed by the bladder medicines I've tried: Ornade, Detrol, Ditropan, Vesicare. I liked Vesicare better than the others but all of them cause mouth dryness that would wake me up several times a night.

I have had some good experiences with Soma (carisoprodol) for muscle spasticity.
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Old 08-24-2012, 04:26 PM #16
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1 effective one i take is vesicare. i actually bought a steamer machine for the bathroom i was missing so much during the nite. now i can make it ok.

i'd have to say copaxone is a plus. it might just be my disease process, however, i havn't had a flare or much progression (have to knock wood) and i've been on it since '03.

not much has helped my pain. my muscles hurt so much and baclofen hasn't helped. zanaflex helped a bit more but had to stop because i'm on a heart med for AFib and it can cause a deadly rhythm disturbance.
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Old 08-25-2012, 05:37 AM #17
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Mariel, Would that be Magnesium Oxide that you take? If so, how many mg per day? Also, were you having heart palpatations?

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Old 08-28-2012, 12:00 PM #18
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I take generic Lexapro 10 mg which keeps my mood level, trazodone 75 mg helps me to have a good night's sleep and lowers pain levels. I still take .625 mg of estrogen and refuse to stop because I fear old symptoms coming back that I had right after my hysterectomy. Adderall XR 10mg generic helps me tremendously with fatigue and concentration.
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RRMS DX 01/28/03 Started Copaxone again on 12/09/09
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Old 08-29-2012, 01:29 PM #19
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Here is the meds I take:
Betaseron
Celexa
Baclofen
Requip
Ativan

Not sure if the Betaseron has helped me or not. Only NOT taking it would tell me.
Celexa has helped me stay happy
Baclofen I take twice a day but I'm not sure if it works for me all that great
Requip for Restless Legs.......awesome stuff
Ativan.....even more awesome stuff. I have a very frequent sense of being off balance and this stuff helps me with that. I take the lowest dose (.05) only as needed.

I used to take Provigil when I was working and wouldn't have made it through the last two years of employment without it.
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Old 08-30-2012, 02:51 AM #20
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I don't have much that I am taking, but here goes:
Rebif for the last 7 months which is helping the disease but ruining my life
X-strength Tylenol to mildly relieve side effects
2.5 mg. oxycodone occasionally for foot pain/burning
Super b complex daily which has temendously helped my mood (but not enough)
I was on copaxone for 14 years.
I tried provigil, and I will probably try it again.
I tried numerous anti depressants, but only for a couple of days...couldn't get out of bed.
Effexor helped, but not with rebif
I really appreciate the info that all of your experiences are providing.
And I love your quote, Karilann!
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