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#1 | ||
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Junior Member
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Went to the neuro this morning and got my official MS diagnosis. She said it was really early and that there are a lot of treatment options available now. I'm still pretty freaked out about everything but I imagine it's going to take awhile for everything to sink in for me. Trying hard not to just run home and bury myself under the covers for the next two weeks!
I've got about 5 DVD's she gave me to watch about potential medications and living with MS. I'll probably go with copaxone which she recommended. Has anyone used supplements in addition to prescription meds with any good results? |
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#2 | |||
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Elder
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Vitamin D3 is a great thing to add. about 2000 international per day is a great start. a good quality multivitamin is a good start as well. The majority of us dont start taking other things unless we start having problems. muscle spasms equal adding magnesium and fatigue has a host of adds many of us do, but until you get there, try not to overwhelm yourself.
Take ONE step at a time. Read the brouchures, and research what your MD gave you, inluding the Copaxone at Copaxone.com and once you pick which on you feel is right for you, and your life then have a heart to heart with your MD. What side effects does she expect. (NO drug has zero side effects) and if and when they happen, will she or her team be ready for you. Copaxone has the least side effects for its profile, but it can have some. Then once your training nurse comes out and gets you set on the med of your choice, call Shared Solutions (this is the copaxone people) speak to their nurse and say "what freebies do you have?" they have ice packs, travel packs, and refrig boxes so that your needles are not wandering loose and causing trouble. it has a lock on it so small hands, or nosey folks cant touch it. They have work out DVDs and so forth. Make sure you ask for your freebies. Good luck! let us know.
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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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#3 | |||
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Grand Magnate
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i'm sorry for your dx. it's always a shock and it's ok to take a little time to let it sink in. do you work? if you do don't disclose right away if you can get away with it. it might serve you well in the future.
if you have a good friend or a family member you can confide in that's a great support. also, i would start keeping an MS medical file on yourself. get copies of the mri's and reports of any tests you have. it is always good to read the reports for yourself and to have these things if you ever need to see another dr. i agree with dej. take one thing at a time. read about the info your dr gave you and see what med you'd be most comfortable with. i've been on copaxone for 8 yrs. if you have any Q's feel free to e-mail me. ![]()
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Judy trying to be New Skinny Butt ______________________ You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should. -------------------------------------- "DESIDERATA" by Max Ehrmann |
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"Thanks for this!" says: | n8swife (06-28-2011) |
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#4 | |||
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In Remembrance
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Welcome to the club, n8swife. So sorry, but at least you can start doing positive things to help keep the monster at bay. LDN may be a good thing to add to your regimine..
![]() We're right here for 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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#5 | |||
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Member
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Sry 2 hear about dx. I was diagnosed in Oct. 09 and I still want to lay in the bed and pull the comforter over my head. At first I chose rebif and now I am on gilenya doing a study. I only take a multivitamin, amantidine(fatigue) and drink ensure. Because of swallowing issues with ms, I tend to be too tired to eat or cook sometimes.
Good luck with the meds. If it doesn't work for you, don't feel bad. Just keep trying until you find what is right for you. |
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"Thanks for this!" says: | SallyC (06-28-2011) |
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#6 | |||
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Magnate
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D3 is most crucial (I only ever took 1000 IU daily, and my levels are off the charts for D3 in my body which is awesome).
If you got a full panel of blood work done, I'd ask about the vitamin levels that were tested to see if you're lacking anywhere. I took D3 alone for a long time, then I began to notice leg cramping. I first though it was the MS, but now I'm not so sure... I read that if you're taking Vitamin D, it's important to also take in Calcium and Magnesium. So I take all 3 now and my leg cramps/spasms/popping feeling has subsided greatly. I'd say those 3, but each person's different in what they need, so best to check with the GP or neuro to be sure. B12 is another that's very helpful for many (and many are found to be deficient in). Sorry to hear about your diagnosis. Take comfort in knowing that we're here to help you with your questions, or if you ever need support. ![]()
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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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#7 | |||
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Magnate
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Hi n8swife ... glad you found us early - sorry about the dx ..
I received some DVDs in the beginning (Power is Knowledge) ... and they helped ... at first, I 'poo-pood' talking to a coach ... then, I finally decided to talk with someone ... one hour /week for 6-7 weeks ... and it HELPED so much!! I take D3 and Vit E, multi-vitamin .. and Flaxseed Oil gel-tabs ... there is alot of denial (I still have problems with it .. because there are days I do feel real good) ... take your time, breathe ... smile - and remember, we're here for ya!! ![]()
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Vonn RRMS - April 2007 It takes only a single idea,
a single action to move the world! The Power of One! |
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"Thanks for this!" says: | SallyC (06-30-2011) |
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#8 | |||
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Member
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Sorry about the Dx, This is a great place to ask questions and vent. I was Dx in 06 there are still somedays that I just want to hide. My doc told me to take high levels of
D3 to help get my levels back up. I take 1200mg calcium with 1000mg of D3, One a Day Women's with another 1000mg of D and I also take from vitamin World there Stress B complex with C500
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SUE Dx--02/22/06 "Education is the ability to listen to almost anything without losing your temper." "In three words I can sum up everything I've learned about life. It goes on" --Robert Frost Fall seven times; stand up eight. . . . Hannah, Amie, Robert |
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"Thanks for this!" says: | SallyC (06-30-2011) |
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#9 | |||
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Wisest Elder Ever
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Supplements are very helpful to take but you don't see results immediately so don't give up on them just because you don't see improvement right away.
Also, cleaning up your diet can help immensely. Just eliminating HFCS and sugar, eating more fruits and veggies and drinking only water has helped me feel better and lose some weight. I take D3, B12, astaxanthin, Krill oil and a whole foods multi-vitamin. I've noticed that I don't get sick much anymore (colds, flu, viruses) and I'm sure the better nutrition has alot to do with that. Oh, and I take LDN (Sally mentioned this in a prior post) and it has helped me more than anything I believe. It's just a process of finding out what works specifically for you and your body. But better nutrition never hurts anyone! ![]()
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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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"Thanks for this!" says: | NurseNancy (06-30-2011), SallyC (06-30-2011) |
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