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Old 10-08-2012, 07:31 AM   #1
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New to MS - support group needed.

Hello All!

I'm new to this site and was diagnosed with MS last week. My journey began with a sever bout of Optic Neuritis. Until that I knew nothing of MS. I've had other symptoms over the past year but never thought anything of them until the ON. I'm currently trying to decide on my drug of choice (pun intended). My Neuro wants me to start Rebif and I'm leaning that way. I have an appointment for a second opinion from an MS Specialist next month. Hopefully, waiting to start won't hurt.

My husband is supportive but not when it comes to medication. He wants me to research more about mercury poisoning because of my amalgam fillings (6 total). Because of his concern my Neuro ordered a heavy metal panel, and I'm waiting for those results. I'm definitely torn by the information I've found. Anyway, my mom gave me the advice to do whatever the doctor tells me. What I need from her is more than just the obvious. UGH! I'm not alone but feel that way most days. Are there community support groups for those who feel like I do or am I just being silly?

Thanks!
Shelly

 
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Old 10-08-2012, 07:42 AM   #2
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Re: New to MS - support group needed.

Welcome.

First off, forget the tooth filling theory. It has been debunked time and time again. If you look at the first tries at cures for MS- bleeding (blood letting), leeches, etc- in the 1870's, you will find that many "cures" are often recycled. In the 1950's blood thinners were advocated as a theory that the blood was too thick.

Thankfully we have come a little further, but the theories still return. Many are, sadly, designed to be a fad to make money for a few.

As to support, you can find it here. As to a community support, your local MS Association os Society office might be able to assist. You can also check with your local churches or synagogues regarding their offerings.

MS is not a life ending concern; it is a serious of speed bumps which will cause you some obstacles, but your life can still be richly blessed and rewarding.
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Old 10-08-2012, 06:46 PM   #3
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Re: New to MS - support group needed.

Thanks for confirming what I was already thinking about the fillings. I guess if my metal levels come back high I can consider having them removed for that reason. So now I just have to get prepared to start taking Rebif and making it a part of my life. I'm just terrified of needles.

I will come here for support and look into finding my local MS Society. I'm sure the MS Clinic will have information.

Thanks so much!

 
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Old 10-08-2012, 07:02 PM   #4
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Re: New to MS - support group needed.

You are welcome. Please tell your husband that he can save expenses by ignoring the latest and greatest "cure". I am sure that his questions about fillings will be repeated many times over the next several decades. Snake oil sales care about taking your money for a hope without possibility.

There are different MS groups out there. Chose one that meets with your comfort level and feeling of support. Your MS Clinic might also sponsor a group too. If you get tired of just MSers, you can look at groups which work with a broader stroke such as chronic disease.

As you learn and grow in your walk with MS, you can pay it forward by sharing with others.

For your husband, I would have him start changing things around your house to make your life easier. In many states this can be refunded via a tax credit as long as the change meets ADA guidelines. Having a shower in which you can sit or a toilet which is raised may not seem like much, but on a bad day, I have shed tears of joy because I could sit and shower or save my energy getting off the toilet. You can also look at lever door knobs, etc. When I built my house I made it ADA compliant and it is great because it makes a difference on the bad days. My cousin built his house to be ADA compliant because he said when he gets old he wants the house to be ready.

You can take many proactive steps to make your life easier, to save energy around the house, and to prevent any possible accidents. These are things that most guys love to do. I know I loved it.

Going forward you may need to vent. I would suggest a hobby in which to focus to channel the frustration or emotion, a quiet place where you can be alone and which your husband and family know that when you are there you need alone time, and the board here where most MSers will understand and will not judge.
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Old 10-09-2012, 06:08 PM   #5
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Re: New to MS - support group needed.

Hi Shelly.
So sorry you got the dx, but glad that you found us. Welcome to healthboards....

As Jayhawk stated, that "theory" was put to rest many years ago; however Im here to warn you now.....if your husband is anything like mine (and my mom, and my best friend, and strangers on the street) everyone has a "miracle cure" for you...and you will hear everything from taking certain supplements to avoiding certain foods...miracle fruits and juices, all natural homeopathic remedies- EVERYONE will have an opinion. Tell them all "thank you for your concern, but I feel comfortable working with my physician" and smile....it will be the hardest year of your life, trying to convince everyone that you are fine....and guess what? YOU ARE FINE. You are the same YOU that you were before someone confirmed you have MS.

My story is much the same...I had zero experience with MS- and also had ON- and then woke up with a numb/ tingly hand, which didnt go away. I eventually went to the doctor (thinking pinched nerve) and he sent me for a CT scan. The radiologist saw "abnormalities" and called in a Neurologist...who sent me in for a MRI, and the rest is history. Fastest dx on record I think. I too, went on to see a MS specialist for confirmation and more tests (LP, EEG, VEP, etc) and it was confirmed.

I started on Rebif almost immediately. I stayed on it for almost 6 years and did extremely well on it...I can help you with all your Rebif questions if you choose Rebif....eventually, however, the drug kicked my butt. I developed antibodies to it, causing me to be sick all the time. This is rare- it happens to about 2% of patients after 5 years, but it did happen to me. From there, I tried a few other drugs, and eventually settled on LDN, which is low dose naltrexone. You can read about it- but you wont get it from most neurologists, its not FDA approved for MS, so I use it off label. To be honest, I never felt better.

The first year is scary. Everything is scary. The unknown is scary....and your family loves you, so they are scared for you. Prove them wrong. I raised 3 kids, got dx only a month after I got married and inherited them. I went to school and got 3 degrees in the past 7 years all while working as a territory sales rep, who travels constantly. I was banging my Rebif injections on airplanes within a month! By the end of the first month, its really like brushing your teeth- you just do it without thinking.

Life goes on..and MS doesnt have to change who you are. I am now in upper managment at a job which is stresful and probably horrible for me- but I love it. Im also finishing my post graduate degree and writing a dissertation. My stepkids adjusted fine...and all is well for the most part. Sure, I have bad days, and Im exhausted- and days when I actually ache...but its ALL in the attitude. You can curl up in a ball and have a pity party, OR you can prove them all wrong. 450,000 people in the US have MS....we cant all be falling apart now, can we??? Be a survivor...and know that anything you need to ask, any questions you might have- someone here has also experienced. You are never alone..

Last suggestion- start having your husband read posts here....and also take him to a local support group to learn about the disease...no matter how supportive he thinks he is- or how much he loves you- he is scared too. He will react to this, the way he sees you react to it...be strong and tell him that youll ask for help when you need it- but right now, you need him to treat you the way he always has...and tell your mom that, too. They will come around. Its a shocker..and a scary feeling when you cant help the ones you love...

Remember, there is no miracle cure for MS. They dont know what causes it, therefore they do not know how to treat it. Interferons and other disease modifying drugs can slow down the progression and keep you healthy- they are worth doing (in my opinion) but there is nothing that you can, or cant eat/ drink/ do which is going to make any difference....

hugs and check in and let us know how you are!
Nikki
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Old 10-09-2012, 08:50 PM   #6
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Re: New to MS - support group needed.

Wow, your situation sounds nearly identical to mine. I got diagnosed in January, after severe optic neuritis. I too may have had symptoms shortly before this time that I just blew off. My diagnosis was super quick, saw an eye doctor on Monday, he sent me to the hospital to be admitted because he was saying aneurysm or brain tumor. MRI Tuesday morning, results Tuesday afternoon. Such a crazy time, hit me like a ton of bricks. MS was not even on my radar, I didn't know what it was or know anyone else who had it. I got started on Copaxone about a month after diagnosis, and been doing good. Copaxone is a daily injection, but its not an interferon like the rest of the MS treatments. The only side effect I've had from it was a mild skin reaction. But if your looking for a local support group, the National MS Society has a website that can tell you of groups that meet close to you. My neurologist gave me the name of one that meets in my area. They were such wonderful people of different ages, a few were around my age (I'm 32) and I got some great advice. Especially about meds to ask the neurolgist about. It was about 2 months after my diagnosis when I started attending these meetings. It took a little bit for it all to sink in but I now realize that my MS dx was not the end of the world. I still lead a normal life, and probably feel even better now since I've been on treatment 8 months.
Nikki

 
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Old 10-09-2012, 09:10 PM   #7
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Re: New to MS - support group needed.

Quote:
Originally Posted by nikki1980 View Post
Wow, your situation sounds nearly identical to mine. I got diagnosed in January, after severe optic neuritis. I too may have had symptoms shortly before this time that I just blew off. My diagnosis was super quick, saw an eye doctor on Monday, he sent me to the hospital to be admitted because he was saying aneurysm or brain tumor. MRI Tuesday morning, results Tuesday afternoon. Such a crazy time, hit me like a ton of bricks. MS was not even on my radar, I didn't know what it was or know anyone else who had it. I got started on Copaxone about a month after diagnosis, and been doing good. Copaxone is a daily injection, but its not an interferon like the rest of the MS treatments. The only side effect I've had from it was a mild skin reaction. But if your looking for a local support group, the National MS Society has a website that can tell you of groups that meet close to you. My neurologist gave me the name of one that meets in my area. They were such wonderful people of different ages, a few were around my age (I'm 32) and I got some great advice. Especially about meds to ask the neurolgist about. It was about 2 months after my diagnosis when I started attending these meetings. It took a little bit for it all to sink in but I now realize that my MS dx was not the end of the world. I still lead a normal life, and probably feel even better now since I've been on treatment 8 months.
Nikki
Welcome. I am glad you are here and sharing!!!
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MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
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Old 10-10-2012, 04:06 AM   #8
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Re: New to MS - support group needed.

Hi Nikki,
Thanks for letting others know they are not alone. Many of us have similar presentations in our illness, however, as you have probably learned, not everyone progresses the same way. Some of us never progress...Clinically, I am 100% stable- according to my MRI, I am a mess! I try not to worry about it and just live my life....

It does take time for things to sink in, but once they do- it really is "all in the head" meaning - how you handle it is how others will handle it AND how you will feel when you get up each day. Its not healthy to curl up in a ball- life is too precious to waste time having pity parties! So thanks for being another positive example for others!

(also) Nikki
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Old 10-10-2012, 06:47 AM   #9
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Re: New to MS - support group needed.

post deleted

Last edited by nikki1980; 10-10-2012 at 08:37 AM. Reason: hijacked thread

 
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Old 10-10-2012, 06:56 AM   #10
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Re: New to MS - support group needed.

Hi Nikki"2", I would encourage you to start your own thread as not to "hi jack" this thread, then posters can answer you directly. Thanks!
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Old 10-10-2012, 08:35 AM   #11
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Re: New to MS - support group needed.

I'm sorry about that, wasn't my intention to 'hijack' the thread. I'll try to remove the post.

 
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Old 10-10-2012, 09:05 AM   #12
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Re: New to MS - support group needed.

Quote:
Originally Posted by nikki1980 View Post
I'm sorry about that, wasn't my intention to 'hijack' the thread. I'll try to remove the post.
No no need to. You are fine. It is just that you have other questions and you deserve your own thread!
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Eternally blessed and eternally optimistic!<><

 
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