Merry Xmas, here is your MS

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Merry Xmas, here is your MS

Postby jcoleman316 » Sun Jan 01, 2012 7:24 pm

Hello, Im a newbie to MS and have so many questions. Four days before christmas,. My Left leg , hip, waist, left hand went numb and felt like tree branches. I was extremely fatigued with colors in my vision bleeding and a buffeting hearing. My wife gave took me to the em room. After 10 hours and an MRI they came back and told me I have over 9 lesions in my brain and that I probably have MS. Nice, just started my new job, no insurance. The following week was brutal. At one point i couldnt walk. Its as if my left side is a bell thats been struck and wont stop ringing. I was first told that I couldnt see a Neurologist till Feb, We freaked out,.. found the national ms society and was able to get in at the end of last week. This guy was a tool. Looked at my mri disc and says you have you have RRMS. In the middle of explaining my symptoms, he starts dictateing to his computer my info, and completely ignores me. Then he says, here pick between these 3 drugs. Its 3k a month forever. then shuffles us out the door. Says he will schedule a 3 day iv treatmeant for over the weekend. That was friday, its sunday now. After paying 300, we were in there 10 minutes. My wife and I sat in the parking lot fumeing. I watch this old fart mosey on out to starbucks next door then back just in time to meet what appeared to be professionally dressed business woman with a briefcase. Kick backs must be nice this year. Maybe someone can answer questions he didnt. What is an attack? besides the obvious what is usual of an attack. How long do these symptoms last? its been 2 weeks so far and im still missing work and might loose the job. What works best for spasicity in hands? My left hand is like "thing" from the Addams Family: closeing, opening, contracting moving like snakes on there own. My step grandmother is an md and did some research and prescribed me Beclofen. I think its the only reason im walking. How soon do u get treatment? Just so over whelming so sudden. I keep hearing MS is no big deal and ppl act like its nothing. But it doesnt feel like nothing. Im 32, my wife is 27 and we are clueless. Thank you for reading. And thanks for any advice.
James coleman, 35, Married to the best wife ever. Diagnosed Dec. 22, 2011. Rebif rx from January 2012, to March 2014. Starting Gilenya soon.
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Re: Merry Xmas, here is your MS

Postby want2bike » Mon Jan 02, 2012 7:25 am

Sympthoms of MS are different for everyone so no one can answer how your sympthoms are going to be. The only reason you need insurance is if you choose to do their drugs. Research shows the drugs are useless at best and may be harmful. Dr. Swank spent 50 years treating MS with diet. The paleo diet has also shown results in treating MS. Amaglam fillings have been related to MS. Hippocrates said "Let your food be your medicine and your medicine be your food" and it is still true today. Once you get all the information you will realize the doctors can't help you with MS. If is up to you to give your body the nutrients it needs and that is the only way to get better. Wishing you the best in getting the necessary information to heal yourself.

http://www.franksherwood.com/tnms.htm

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://articles.mercola.com/sites/artic ... _DNL_art_1

http://www.youtube.com/watch?v=trWTCEIP ... re=related
http://www.healingdaily.com/Doctors-Are ... the-US.htm

http://www.healingdaily.com/conditions/ ... panies.htm


http://www.videosurf.com/video/multiple ... s-81761590
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Re: Merry Xmas, here is your MS

Postby MarkLavelle » Mon Jan 02, 2012 8:57 am

want2bike wrote:Research shows the drugs are useless at best and may be harmful.
The drugs are certainly harmful to some, and do not measurably help *everyone* who uses them, but to call them useless is a your personal opinion.

There's plenty of evidence that all DMDs slow MS progression for *most* users. If there wasn't substantial evidence the drugs wouldn't be for sale...

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: Merry Xmas, here is your MS

Postby jcoleman316 » Mon Jan 02, 2012 9:22 am

Thank you for your replies. I dont believe in new age eating stiles. Of course eat healthy,..its a mantra everyone chants for any illness or even extremely healthy ppl. Ive been reading forums a ton and even read where extremely healthy ppl at 19 no less still get this. Its just fate, and im trying to figure out the best way to try and have a normal life. Even though after all the reading it seems as if no one with ms has a normal life and are just miserable forever. I am thankfull to find out that these symptoms are supposed to be here and wont go away till treatment, even if they do. In a week im already learning to live with it. I think the toughest part would be friends and family understanding that we feel so miserable. The dam ringing just wont stop. thank you fore your replies.
James coleman, 35, Married to the best wife ever. Diagnosed Dec. 22, 2011. Rebif rx from January 2012, to March 2014. Starting Gilenya soon.
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Re: Merry Xmas, here is your MS

Postby lyndacarol » Mon Jan 02, 2012 9:51 am

Welcome to ThisIsMS, JC; we endure a wide variety of symptoms; we hold many different opinions on the cause and treatment of this disease. We share experiences and information; we try to be supportive of each other.

I happen to agree with many of the ideas on diet of want2bike. I encourage you to investigate the dramatic story of Dr. Terry Wahls of Iowa City, Iowa (http://www.TerryWahls.org). Her focus is the mitochondria and the nutrients required for proper function. I am not sure yet if I am on board with the mechanism as she describes it, but I find it hard to deny her improvements. She is currently conducting a clinical trial on the regimen she used. She intended to release some information on interim results at a November neuroscience conference; I have not yet heard the specifics.

There is no downside to following her diet and exercise program. All the best to you.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Merry Xmas, here is your MS

Postby euphoniaa » Mon Jan 02, 2012 10:13 am

jcoleman316 wrote: Even though after all the reading it seems as if no one with ms has a normal life and are just miserable forever.

I am thankfull to find out that these symptoms are supposed to be here and wont go away till treatment, even if they do.


Hi and welcome, although I'm sorry for your diagnosis! It sounds like things are rough for you right now, but keep in mind that RRMS means relapses and REMISSIONS, so it's likely your symptoms will die down considerably. Steroids are thought to hasten the end of a relapse, although their side effects can be nasty, and I've never done them (I'm basically med-phobic).

Treatment with the DMDs (like Copaxone, Avonex, Rebif) that your thoughtless doctor offered you, doesn't promise to treat symptoms at all, and is not a cure, but, Like Mark says, research shows that many (not all) who take them have slightly fewer relapses and lesions. (I've never done DMDs either.) Still, they have only limited effectiveness. Even if you choose not to take DMDs (or if they're out of your price range!), symptoms can be treated anyway.

But I'm here to state that after at least 38 years of MS, I'm not miserable at all. Honest! I'm still active, silly, work full-time, and I laugh. A lot. Every day. All day. :smile: I have way more absurd stuff going on in my life than MS.

We're all unique in our MS presentation and in our approach to treatment. You can find forums here on all the mainstream treatments and also those outside the norm, so dig in to the research and experiences and find your own path. I can't recommend a specific diet myself, but you can't go wrong by optimizing your health in the meantime with a healthy diet and exercise.

Good luck!

P.S. And try to find a new, more compassionate doctor who's not a jerk!!!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Merry Xmas, here is your MS

Postby jcoleman316 » Mon Jan 02, 2012 6:14 pm

Thank you very much for your replies. This site has made me really feel better about this. And its great to hear i wont be miserable. This first experience was so intensly scary. Ive never been impaired before and didnt even understand how these attacks play out. The unknown scares the hell outa me.
James coleman, 35, Married to the best wife ever. Diagnosed Dec. 22, 2011. Rebif rx from January 2012, to March 2014. Starting Gilenya soon.
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Re: Merry Xmas, here is your MS

Postby want2bike » Tue Jan 03, 2012 5:00 am

I can only post the evidence I have. The study I post show people did worse when taking the drugs.


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Re: Merry Xmas, here is your MS

Postby Rach0222 » Tue Jan 03, 2012 7:40 am

I was recently diagnosed with MS as well, just two days before Christmas. But I knew it was coming for a few weeks given my symptoms and test results. The best advice I received from someone I know with RRMS also, is to educate yourself and try to keep a positive attitude. Steroids can treat symptoms, but the DMDs may prevent symptoms from ocurring in the first place. I have taken both IV and oral steroids and the worst side effect for me was a bit of insomnia. Information on clinical trials for all the DMDs is out there. I started Copaxone a week ago so I cannot personally say if it is working for me but the drug has been studied for over 15 years so I am hopeful it will work for me. Each of the DMDs have a support team that may be able to offer financial assistance or help you get into a trial. I am reading the book Multiple Sclerosis: The Questions You Have, The Answers You Need by Rosalind Kalb and I am finding it very helpful. The more I educate myself on this disease, the better I feel about it and my chances of living a somewhat normal life. For me, the time leading up to the diagnosis has been the hardest part, having to tell friends and family, and having to accept the diagnosis. But now that I have started treatment and spent much of the last two months educating myself on MS so I know what to expect, I feel like my life is starting to get back to normal again. My friend with MS told me "it is living life with adjustments" and I keep reminding myself of that when I start to feel down. I wish you the best!
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Re: Merry Xmas, here is your MS

Postby jcoleman316 » Tue Jan 03, 2012 10:31 am

Im sorry for your diagnoses. That sounds exactly like my situation. Its insane how life works out. Im sittin here at the moment with my first fusion of 3 for the week. But great news is i was able to get on rebif for free for the first year wich im going to sign for as soon as i get out of here. Get it in a week! I want my left hand back so bad. I wish all of you the best. Its really helped me cope and accept.
James coleman, 35, Married to the best wife ever. Diagnosed Dec. 22, 2011. Rebif rx from January 2012, to March 2014. Starting Gilenya soon.
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Re: Merry Xmas, here is your MS

Postby NHE » Wed Jan 04, 2012 12:00 am

Rach0222 wrote:I am reading the book Multiple Sclerosis: The Questions You Have, The Answers You Need by Rosalind Kalb and I am finding it very helpful. The more I educate myself on this disease, the better I feel about it and my chances of living a somewhat normal life.


Other good book suggestions can be found on the Reading Nook forum. Be sure to take a look at the MS Book List thread.


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Re: Merry Xmas, here is your MS

Postby carlysidra1 » Thu Jan 05, 2012 10:14 pm

i'm sorry things suck right now. i know the feeling. diagnosed in may 2010 and went on copaxone and all my symptoms have gone away. i did one stint of solu-medrol about 6 months after my diagnosis to deal with some sensory leg issues (numbness/cold feeling and couldn't drive or walk very well) and within a week i was normal again. had major l'hermittes (shocks down my body into my feet when i bent my head down) which is all gone, major heat still fatigues me and can give me some tingling all over, and i live in humid florida, but that can be managed and is more of an annoyance than painful. i am one of the "lucky" ones i guess who gets the not so horrible ms symptoms...but it still affects my life, mood, work...we all have it rough in some way or another. i deal with the injections...and they seem to be working based on my MRI's and my lack of symptoms. everyone is different. exercise and positive thinking can't hurt. good diet can't hurt. lots of vitamin D (i take at least 4000 IU's a day and B12 shots and a probiotic. AS LITTLE STRESS AS POSSIBLE WILL NEVER HURT. take care of yourself. it probably wouldn't hurt you to try the CRAB drugs...there are a million theories, none of which have been proven. life isn't over, i promise. it just takes time to get over the "fear of the unknown" and deal with the day to day issues. i definitely feel a lot better about saying "i have MS" than i did in may of 2010. if you have a good family, reply on them and be open and honest about how you feel and don't be afraid to tell people and educate them about MS. i always tell myself i'd much rather have MS then many other diseases out there because it can be managable....still sucks, but there is always someone worse off than me. best of luck.

carly dx ms 5/2010
copaxone
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Re: Merry Xmas, here is your MS

Postby want2bike » Fri Jan 06, 2012 6:06 am

If you choose copaxone get all the facts. Here is a llist of real people who take the drug. I like Dr. Wahls approach better.

http://www.askapatient.com/viewrating.a ... PerPage=60
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Re: Merry Xmas, here is your MS

Postby manindra » Sat Jan 07, 2012 10:23 am

Hi,
see MS is most unwelcome guest we want, but now it's here We have to cope up.no medications (some medicines are doing round,but they are on-trial ! for further 'they' say research is going on ? so if research is on now, I am sure they'll find cure/medicine after us !!
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Re: Merry Xmas, here is your MS

Postby jcoleman316 » Sat Jan 07, 2012 2:06 pm

Thank you for the book suggestions. I have "Ms-the questions u have-the answers you need" on order. I changed my mind on the fusions,,...they suck hard core. I havnt felt like myself since. I cant wait till it wears off. The nurse said about 5 days? Hopefully sooner.

I got my rebif yesterday. The nurse will be here monday to show my wife and I how to use it. Im nervous about side effects,.I know theres no cure,. but I'm really hopeing to get back to some kind of normal. At least feel that way. My hand and balance are progressing really well. Got a hacky sack that I constantly fiddle with to try and get some dexterity back. Keep workin!!!

I hope all of you are feeling well today!
James coleman, 35, Married to the best wife ever. Diagnosed Dec. 22, 2011. Rebif rx from January 2012, to March 2014. Starting Gilenya soon.
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