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08-19-2011, 07:31 PM | #11 | |||
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Elder
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I was always a needle weenie, and thought I could never do a daily injection. Turned out to be not a big deal. I was apprehensive the first few times, made sure my husband was home and knew what to do in case I had some freako reaction (never did). Then it just got to be part of the routine, like flossing my teeth. No kidding.
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* * * **My flesh and my heart may fail, but God is the strength of my heart and my portion forever. (Psalm 73:26) |
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"Thanks for this!" says: | daisy.girl (08-20-2011), Dejibo (08-22-2011) |
08-19-2011, 07:43 PM | #12 | ||
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Member
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I am not nervous about giving the injections. Just about how I will react to the medicine!
I give myself B12 injections.
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Dx: RRMS Jan 2010; LDN: March 2010-Dec 2010; Aug 2012-Nov 2012 Tysabri: Feb 2011-March 2011 reaction Gilenya: August 2011 reaction Copaxone: October 2011 reaction Tecfidera: May 2013 reaction |
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"Thanks for this!" says: | SallyC (08-19-2011) |
08-20-2011, 12:16 AM | #13 | ||
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n/a
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agreed that it is a difficult and very personal decision. In 94 when my MS was probable/possible the docs said that there was little they could for me. In 1998 I got the definite dx and the chance to choose/try the treatments. I believe that Copaxone is helping me and I am grateful that treatments however imperfect do exist.
something of interest- this article on the web New Analyses from 16-Year Follow-up Trial with Betaseron Demonstrated that Early and Sustained Treatment of Multiple Sclerosis Patients Enrolled in the Trial Affected Their Long-term Outcomes best in your decision |
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"Thanks for this!" says: | daisy.girl (08-20-2011), SallyC (08-22-2011) |
08-20-2011, 08:25 AM | #14 | |||
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Member
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It's the lottery that drives me crazy - what if I take nothing and end up the train wreck that my Neuro thinks I will probably be? or maybe all will be well and the stupid disease will stay off my back.
Alteratively if I take the drugs and have side effects and who knows what in the long term? Then again they might be the only thing between me and a wheelchair or nursing home in ten years. It's a crap shoot however you look at it. Lyn |
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08-22-2011, 01:10 AM | #15 | ||
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Junior Member
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Thanks so much for this discussion. I have recently joined this site primarily to help me research the pros and cons of the various meds. I am trying to decide whether to treat the disease or treat the symptoms, and my neuro is pressing for a decision on which drug to choose by 9/23/11.
I have made no decisions yet about what is right for me, but I am so grateful for the viewpoints being discussed here - whatever I decide, I will feel more confident about what is right for me. |
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"Thanks for this!" says: | barb02 (08-22-2011), daisy.girl (08-22-2011), dmplaura (08-22-2011), NurseNancy (08-23-2011), SallyC (08-22-2011) |
08-22-2011, 07:43 AM | #16 | |||
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Magnate
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Quote:
This bugs me... why is there a deadline on your choice of a medication? MS isn't going anywhere! A deadline on a medication choice would set off a HUGE red flag of warning for me! He trying to get your $$$ added in for Quarter 4's results?
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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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08-22-2011, 11:19 AM | #17 | |||
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In Remembrance
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Quote:
If ya really want to see him squirm, ask him for LDN, to treat your sx until you decide on a DMD, if ever.. Nothing is a cure, so it's your choice. Tysabri is the best, IF it works for you and if you want to take the chance on getting PML.
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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08-22-2011, 12:50 PM | #18 | ||
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Member
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I was on copaxone from 2007 until just this month. Too much lippoatrophy and I've got no where else to inject.
My neuro wants to put me on beta seron. I've researched it and for now I won't take it. Too many side affects, forget about the flu symptoms, I'm terrified of the likelihood of the depression (I'm barely under control with 3 meds), and heavy periods (I'm just about at menopause and I don't want anything to interrupt my hormones). Maybe it won't be bad, maybe I won't have any side effects. With things barely controlled I cannot afford to feel sick every other day for two days! I'll be flying solo for now, unless my neuro pushes.
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Relax--It only hurts until you die . I'm still walking upright and six feet above ground. . |
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08-23-2011, 12:36 AM | #19 | ||
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Junior Member
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Quote:
Sally - first of all, I'm such a newbie that I didn't know what LDN was when I read your reply. After googling, I see that it's Low Dose Naltrexone. I was given five drugs to consider by the Neuro and that wasn't one of them, but I did locate info on it myself and added it to my consideration list on my own last week. I will go back and study it in more detail now. dmplaura - this is my first visit with any Neuro and all I can say is - if I was giving a party and selecting a guest list for warmth, fun and cameradity, she wouldn't get invited... I believe the deadline of 9/23 is simply based on the fact that the date is my next appointment with her and she insists that some medication is absolutely necessary ASAP. I have a lot of questions about that: 1) I am a heart patient 2) I am a type 2 diabetic 3) I've been coasting along on no meds at all since my "probable MS" dx on 3/2007 - what's the rush now? I want to make sure that the potential side effects of any one drug will not make either of my other two conditions worse, and I didn't get the feeling that she was listening to me about that issue. Your comments cut right to the heart of it, though. I think I may need to take my time about finding the right Neurologist for me as well as the right course of treatment. Thanks to both of you ladies - I really appreciate your wise guidance. |
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08-23-2011, 05:41 AM | #20 | |||
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Senior Member
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Hi daisy . I don't take a dmd now. I have taken Avonex (horrible side effects for me so my neuro advised no interferons for me), Copaxone twice (the second time I had an anaphylactic reaction), Tysabri (I got horrible headaches after about 8 months of infusions).
My neuro won't consider Gilenya for me until it has been on the market for at least 3 years. Good luck with whatever you choose. A lot of people don't have any problems with dmds.
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Multiple Sclerosis-Dx May 2007 . |
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"Thanks for this!" says: | daisy.girl (08-23-2011), SallyC (08-23-2011) |
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