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05-18-2011, 06:24 PM | #11 | |||
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Elder
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AstaXanthan ROCKS! great choice!
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RRMS 3/26/07 . Betaseron 5/18/07 . Elevated LFTs Beta DC 7/07 Copaxone 8/7/07 . . |
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05-18-2011, 08:30 PM | #12 | ||
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Senior Member
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I'm all for doing what you feel is right for you but imvho I would not be comfortable stopping MS medication unless I had tried all of them and nothing was tolerable, especially for someone so young.
Maybe it is because I'm a nurse also and have seen so many horrible cases of MS but I have to side with your Mom and would be terrified if my daughter stopped one without trying something else. Once the damage is done there often very little that can be done to repair it which frightens me and motivates me to take my Copaxone. I wish you all the best and perhaps you could seek a second physician's opinion?
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He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion. Anonymous |
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05-18-2011, 09:53 PM | #13 | |||
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I do worry about the permanent, irreversible damage, and my age as well. What also worries me is how bad mine all started off. I deteriorated pretty quick when it hit me, and my boyfriend observed it all. I went from normal to a completely uncoordinated, discombobulated mess. Speech/slowed slurred, my breathing was messing up while I was sleeping, choking on my beverage everytime I took a drink, couldn't get my right leg to move, my vision was doubled and foggy, the report from the ER says my eyes were skipping. Sleeping all the time, not remembering anything, laughing hysterically out of nowhere for unknown reasons (that creeped me out), the vertigo was horrid, I was spinning one way and the room was spinning the opposite way. tremors in my hands and legs. spasms and this electric shock on the right side of my brain. oh and the feeling of someone taking a potato peeler to the back of my eyeball all day long. all of that started in the middle of the night one night in January of 09. It lasted until I was diagnosed, a month later. I'm am really afraid of experiencing that again. and I admit, I probably should check out all of the CRAB before I say no more, but I have found that I am one of those sensitive body types. I have the normal side effects and not as normal side effects to all the drugs I have tried already (medications for symptoms) and I have a feeling I am going to have trouble with others. I wouldn't be willing to try any of them but Copaxone. But I just don't want to put drugs into my body anymore. It honestly makes my heart sad. I feel bad because my loved ones are kinda mad at me/hurt that I am doing this. My best friend backs me all the way which helps, but I don't want to hurt my family/loved ones feelings Thank you Kitty for posting what vitamins you are taking! |
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05-19-2011, 11:17 AM | #14 | |||
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Wisest Elder Ever
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Diet and supplements will benefit anyone - not just those with MS. But for those of us with auto-immune disorders it seems to have good results probably because we're reducing inflammation and boosting our anti-oxidant consumption. Not to mention D3 which has been proven to help a whole plethora of conditions. I lost my health insurance when I had to stop working so LDN, being so inexpensive, was a Godsend for me. Maybe that's why so many folks who have insurance don't try it. The whole "you get what you pay for" is definitely not true in my case! I was paying a ridiculous amount (well, my insurance company was) for the prescription DMD's and I was just getting worse. Once I started the LDN - which is not an insurance-covered DMD, my condition made a U-turn. If Copaxone or one of the Interferon's works for you that's wonderful. But they don't work for everyone - just like LDN doesn't work for everyone. Everyone has a different chemical makeup in their body so nothing is going to work 100% of the time for 100% of the people.
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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05-19-2011, 11:35 AM | #15 | |||
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So I am so heartbroken right now.
Everyone in my family is mad at me. Just was lectured from my mom, explaining that I will end up in a wheelchair and die early in life by making this decision. This is my life, my body, and im the one that has to live through all of it. So why is it I can't get support from anyone but you guys and my best friend. I want to cry so bad right now. im so sick of the toxic crap im putting into my body and was so happy/excited to give this a chance. But I guess since everyone has turned against me and is super mad at me, ill just keep sticking myself to make THEM happy |
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"Thanks for this!" says: | Dejibo (05-19-2011) |
05-19-2011, 11:51 AM | #16 | |||
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In Remembrance
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Have you talked to your Doc about trying LDN? It may be worth a try for you. I still have MS, but for me, LDN makes it tollerable. The crabs weren't my cup of tea, either.
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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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05-19-2011, 12:02 PM | #17 | |||
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I needed that ever so badly. Im sitting here at working crying like an idiot. I need support, this is my life and my body. My moms never really been a part of my life. She steps in when she thinks she can control a situation. Never calls to check in on me or my health but makes sure to call and yell at me that I haven't gone to the doc (not by choice, I don't have coverage) or to point out that I have a debilitating disease and I need to do something about it. Gosh. I wish others could just TRY to understand |
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"Thanks for this!" says: | SallyC (05-19-2011) |
05-19-2011, 12:07 PM | #18 | |||
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Elder
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please know that I didnt just wake up one day and decide to stop. it took 4 years! I failed off of the interferons, and it did some damage to my liver. I went to Copaxone and it took years and years for the damage and frustrations to build up to the point of me not wanting it anymore. The last year I was on it, I begged my family, my MDs, my friends, and my nurses to please just let me stop taking it. In the end I had serious pancrease issues, gastro paresis, liver function troubles, and so on. I ran out of meds to take. There were no others, and Copaxone was my drug of last resort. This is why everyone including my family pushed me so hard to stop.
Please understand how scary this is for your family. All they know is what they have been told, and what you show them. If you show them that you are working as hard as you can towards the goal of optimal health and doing everything in your power you gain their trust and respect. You dont get to quit because you had a bad day or even a bad week. You need at least a bad year to start the conversation. Im sorry if I made it seem that I simply woke up one day and laid down my needles. it wasnt nearly that easy. Hang in there. Talk to your family. Keep the diagloge going.
__________________
RRMS 3/26/07 . Betaseron 5/18/07 . Elevated LFTs Beta DC 7/07 Copaxone 8/7/07 . . |
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05-19-2011, 12:20 PM | #19 | |||
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In Remembrance
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You are still sounding like you're feeling guilty for stopping and I think that's because of the pressure to continue on, like a good soldier, by your Doc and then loved ones. All I know is, I feel better now....how about you?
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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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05-19-2011, 12:37 PM | #20 | |||
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Member
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Thank you dejibo
And you never made it seem like an overnight decision by any means. And like I said, I do feel somewhat bad because haven't tried the other drugs out, however, I do not want to put myself in the position of risk to organs, infections or another disease. I have alot of symptoms, and don't take any drugs for them, I suck it up and deal with it because I don't want to die trying to mask a symptom. God has a plan for me and this disease and im pretty sure he designed my body to be compatible with natural things on this planet, not man made drugs that damage my body. Thanks again Dejibo. think im going to get all my researched printed out and organized and make them read it so we are all on the same page. |
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