Brand New to MS

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Brand New to MS

Postby BrownEyedGirl » Fri Aug 10, 2012 9:38 pm

Hi, my name is Jen. I am 26 years old and I was just diagnosed with MS about a week and a half ago.. and I'm pretty sure I'm still in a state of shock..

The last year has been the most stressful of my life, so I guess if I were to begin showing symptoms of MS, now was going to be the time. I am getting married this September, and that's really enough to make this an incredibly stressful time.. I do not like planning things, but when it came down to it, I really did want to have a wedding. It would have been nice it some would have planned the whole thing for me, but lord knows I wouldn't have been able to let that happen. In any case, making decisions has always been really hard for me, so most of the time I've just been trying to tread water. And now this..

So, my MS ordeal began in early June. I noticed something was wrong with the vision in my right eye. At first my eye hurt and I was getting a lot of head aches, but the soon the pain went away. Yes, I have optic neuritis.. I went to my doctor..who sent me to the eye doctor..who give me a visual field test (which my right eye didn't do so well on). Then they sent me off for an MRI. A few days later my doctor gave me a call telling me, worst case scenario, it's MS. They found lesions on my MRI. But she didn't seem super convinced that it was MS.. She sent me to a neurologist. I wasn't expecting much.. I thought maybe he'd order more tests.. but they did a general exam and he reviewed my MRI, and soon enough he was telling me I have MS...

They had me go in early this week for steroid infusions. However, after the first session, I got ridiculously ill. I was so nauseous that I went in the next day for IV fluid and anti-nausea meds instead. Apparently this is not a typical reaction.. That's when I found out my vision loss is probably permanent anyways.. Kinda wish they'd mention these things more upfront. Or maybe I didn't ask the right questions.. Anyways I'm starting on Copaxone soon. I just received the injecting device in the mail today. This has all happened so fast, that I'm not entirely sure I've fully processed all of this. I mostly feel fine, so it's kinda hard to accept I have this incurable disease. I'm a bit terrified, but I'm ok. How is someone supposed to handle all of this? I thought I was supposed to be in my prime.
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Re: Brand New to MS

Postby jimmylegs » Sat Aug 11, 2012 5:23 am

welcome to the forum jen, and sorry to hear you've been going through a scary process while trying to plan a wedding :( no fun.

there are lots of folks here with a lot of different ideas on how to deal with ms. my own personal focus is nutrition, starting with a balanced healthy whole foods diet, and doing bloodwork to find out if additional supplements are needed. with ms, there are a known constellation of nutrient problems, they've all been identified and more or less researched in the scientific literature. have the docs done any nutritional bloodwork at all? usually they will maybe test b12, possibly test d3, often decide both are 'normal' and leave it at that. there's much more to it however! when you mention vision, my brain goes straight to zinc. zinc is on average lower in ms patients, and zinc status also affects the body's ability to utilize b12 and d3, by the way. chronic stress is tough on your system too, and when you're stressed, magnesium loss increases. magnesium is known to be lower in ms patients too.

zinc is also very important to liver health, and i just noticed a study on glatiramer acetate (copaxone) and liver damage, so you could be proactive there, since zinc has been shown to reverse liver damage such as cirrhosis. throw the search terms

zinc liver hepatitis

into google, and scan the studies that are returned.

anyway. it's a scary time but the more you read the more you learn and the more proactive you can be. if you're interested in nutritional stuff we have a couple different useful sections to browse (eg diet, natural approach) and my own personal spin (which involves some bloodwork) can be found on the first post of my regimen thread:

regimens-f22/topic2489.html

once again, welcome to the forum, and happy reading :)
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Re: Brand New to MS

Postby MarkLavelle » Sat Aug 11, 2012 7:53 am

Welcome, and sorry you've joined this club, Jen. It's not uncommon to be dazed by the diagnosis for quite a while.
BrownEyedGirl wrote:[...] She sent me to a neurologist. I wasn't expecting much.. I thought maybe he'd order more tests.. but they did a general exam and he reviewed my MRI, and soon enough he was telling me I have MS...
I don't intend to offer false hope, but I strongly recommend getting a second opinion, preferably from a teaching hospital with a dedicated MS clinic. It's not too unusual to be diagnosed so quickly, but part of the process is supposed to be eliminating all the alternatives (Lyme, lupus and 100 others).

That's when I found out my vision loss is probably permanent anyways.. Kinda wish they'd mention these things more upfront. Or maybe I didn't ask the right questions..
That is almost certainly too pessimistic. While it's true that sometimes there is no improvement after an exacerbation (my case with paresthesia), partial recoveries are common over 6 months or more. My neuro says repair can continue for up to two years.

Best of luck,
Mark

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: Brand New to MS

Postby LisaO » Sun Aug 12, 2012 7:45 pm

Hi, Jen. I'm glad you found this place where you can talk to other people about MS. It's a weird, frustrating disease. I was diagnosed almost 4 years ago. (I also had optic neuritis.) It is a lot to deal with, and of course you are still processing everything. I especially identify with your feeling "mostly fine." It still seems unreal to me when I say to someone, "I have MS." I don't feel like a sick person; I feel like me!

I want to second Mark's suggestion about seeing a second neurologist. It's in your best interest to have a doctor who specializes in MS; not all neurologists do. There is a lot of interesting research going on about MS and its treatments, and you want a doctor who is up-to-date. It's important to me to have a doctor who will answer all my questions and keep explaining things until I understand them and tell me when there are options to choose among. I just switched doctors, not because I didn't like the first one but because I just seem to communicate better with the new one.

Best wishes,
Lisa
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Re: Brand New to MS

Postby TigerEyes19 » Thu Aug 16, 2012 1:44 pm

Hi Jen! My name is Nicole. It looks as though you, LisaO & I all joined within a few days of each other! Kinda cool to know that I am NOT alone in all of this.

I was diagnosed 3 months ago. Started Copaxone last night. I was scared to death, but I ROCKED that injection! I had read some of the posts on here from other Copaxone users & was really worried that I wouldn't be able to do it. I am not putting anyone down, but I really didn't understand all of the negative posts after doing my injection. Maybe tonite will be different, or perhaps next week... Or maybe I just have a high tolerance for pain? No telling...but I am glad that I psyched myself up, prepared for the worst...then was pleasantly surprised when I discovered it was a breeze.

My oldest daughter just got married (July 21st) and I was the wedding planner...which was difficult, to say the least. The day of the wedding was the hottest day of the summer thus far & I melted. But I just kept on pushing myself. You also, can get through your wedding planning. Accept help when it is offered to you! Don't be too proud to ask for help either. And just a tiny hint from experience...SOMETHING WILL GO WRONG. No wedding goes over without at least 1 hitch. But that "hitch" will also be what makes it memorable. It will be a story that you & your husband will tell for years to come. Just laugh it off, don't sweat the small stuff. It's not worth it. Quack like a duck and let the worries roll off your back like water rolls off a duck. It will be special, for you will be marrying the one you love. It doesn't have to be perfect. Nothing is, and you totally know that in your heart!

I would like to "third" Mark's suggestion of seeing another neurologist. And LisaO makes some valid points. Did you ever have a spinal tap done at all? I am on my second neurologist as well, but am considering the MS Center instead. They only see MS patients. Period.

Hang in there darlin', we are in the same boat. MS sucks, but it does NOT define who we are. We are still the same people, just with a new life challenge. Every path has a few puddles. And remember, God will never give you more than you can handle.
Everything happens for a reason in this game called LIFE.

Cheers,
Nicole
RRMS Dx - 5/15/2012 ; Copaxone since - 8/15/2012
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Re: Brand New to MS

Postby want2bike » Fri Aug 17, 2012 2:26 pm

You should understand your health is in your hands not the doctors. There are studies showing the drugs do not work. You need to get all the information you can so you can choose wisely. If you decide to take the drugs here is a web site which will tell you what to expect. Some address this disease with nutrition. Wishing you the best.

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

http://www.nytimes.com/2012/07/18/healt ... .html?_r=2

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

http://articles.mercola.com/sites/artic ... nking.aspx

http://www.askapatient.com/viewrating.a ... PerPage=60

http://www.facebook.com/notes/ccsvi-in- ... 1295097210
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