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Unread 11-08-2012, 09:03 PM   #1
Jenn M
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Hello there, I just registered on this site so I may ramble. My story: hospitalized with severe vertigo and through MRIs was diagnosed with MS last week. I think I am still in the denial stage. There was questionable curcumstances like being sick and getting a vaccine prior to hospitalization, but I've seen a secondary neuro doc and he says the same so Im going with it for now. But staying positive! Anywho, I'm seeing the neuro doc again tomorrow and getting my questions etc together. He wants to start me on meds right away of course. (Im a little biased against pill dispensing drs) I know MS is individualized and each person has its own path (Im hoping my path will be tread on lightly). but any thoughts on the various drugs out there? the new pill form is obviously enticing. Im not even sure I want to start right away and just start with all the supplements. Any other questions I should ask? anyone else have the vertigo/ balance symptoms? Do they go away? Im walking ok, just a little wobbly and tired still. Any suggestions to get off the couch andnot be so tired?? and I have told my boss already so hopefully that doesn't bite me in the butt!! Maybe this will be the catalyst to finally get me to move from the desert thanks is advance for your responses!
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Unread 11-09-2012, 12:40 AM   #2
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Welcome to Neurotalk!

"anyone else have the vertigo/ balance symptoms? Do they go away?"

Yes. I've suffered through extreme vertigo. Felt like I was drunk. No nausea, just vertical (up and down) vertigo. It lasted 3 + weeks the first time I had it very bad, and then resolved. I had it a second time for 2 + weeks, then it resolved. Most recently, I began experiencing vertigo/dizziness again, but it didn't last as long, and wasn't as severe, as the first 2 encounters.

I have sensory balance trouble. My left leg feels like it's buckling under me by times. At the height of the current relapse (started in September, or earlier... I could have been ignoring symptoms, I'm just too stubborn!) I was dreadfully off balance, feeling like I was falling over, dizzy when slammed quick by this left side sensory balance issue.

The good news: I wasn't found to have mobility issues, or spasticity. That was a relief! While the balance is sensory in my case, it is still a big problem if I have another flare of it. It's for the most part gone now, although I still have times when I reach for a plate in my kitchen cupboard with my left hand, and bam, I'm hit with that leg falling out from under me sensation.

Whether symptoms stick around or go into remission completely depends on each individual. MS'ers are like snowflakes, none of us are identical with our diseases.

I hope you enjoy the forum and find lots of information here.
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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Unread 11-09-2012, 09:09 AM   #3
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I've had bouts of vertigo. They do go away, thank goodness.

And welcome to NeuroTalk. Set aside some time and do some reading here. There is a wealth of knowledge, and a wealth of companionship.

Life really is a bowl full of cherries once you learn how to spit out the pits.
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Unread 11-09-2012, 12:13 PM   #4
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Hi Jenn. Welcome and nice to meet you.

So sorry as to why you're here but it's a good place with good people wanting to help.

Stay and keep us informed of how you are doing. In the meantime, take a deep breath and let it out slowly..
~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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Unread 11-09-2012, 01:41 PM   #5
Debbie D
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Welcome to NT Jenn-sorry for the reason you've joined our club...

I've experienced vertigo & balance issues too. It goes away for me. I've been on Copaxone for 4 years, right after I was diagnosed. My neuro told me that the daily injections will be replaced by 4x/week injections next year. I'm not too excited by most of the other drugs due to the fact that they suppress your immune system. Also I have heart rhythm problems so I don't qualify for some of the new drugs
Hope you get some effective treatment for your symptoms & get all the info you need in order to make an informed choice regarding disease modifying meds. As much as I hate giving myself daily injections, I'd much rather do that then end up totally disabled. But I made an informed decision based on the level of MS my body is experiencing & what my doc felt would be effective with minimum side effects.
Keep us up to date on what's going on...
Instant Karma's gonna get you-gonna knock you right in the head...John Lennon
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Unread 11-09-2012, 03:43 PM   #6
Jenn M
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thanks everyone! saw the neuro doc this morning and we're not going to meet again for a month. let it all sink in and figure out which direction to go. hoping my MS is mild enough to allows for some time. I told him it takes me longer to pick out a toaster let alone my health just want to feel better and get back to work, you can drive yourself insane researching about this. thanks for your warm welcome and I'll be searching around this site for sure
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Unread 11-09-2012, 08:33 PM   #7
Jules A
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Hi and welcome!!
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.
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Unread 11-10-2012, 11:37 PM   #8
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hi jenn and welcome to NT.

i'm sorry about your dx of MS. you sound like a very level headed person.
it gets better, the dealing with it part.

i don't have vertigo but i do have a balance issue and a gait problem. i had to start using a cane but have stayed mobile and driving. i was dx'd in '03.

i've been on copaxone. i don't know anything about the oral meds but researching everything and evaluating them based on your disease and lifestyle should give you an answer. i know that a lot of people don't take any meds. coming from a medical background i am in favor of meds. i believe what the drs say about the disease process and just didn't feel comfortable taking a wait and see approach.

i learned over time to really listen to my body. if it says stop, or rest, or sleep, i do. i used to push past my limits in the beginning and it just made things worse.

this is a great site with wonderful people. glad to have you here.
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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Unread 11-13-2012, 02:37 AM   #9
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Hi Jenn, sorry you have to sign up for this forum but you will find lots of warm support here. Yes, it can get overwhelming in the beginning. I believe in using the drugs and went for aggressive treatment because i was so fearful of becoming disabled.

BUT, I did not start taking actual medication until about 5 months after my diagnosis. I guess I was lucky because there were no problems. I've had MS for 5+ years now and no relapse either (knock on wood!) A month's delay to think things through and weigh your options is perfectly reasonable. Good luck with your choice.
On Tysabri and love it.
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Unread 11-14-2012, 08:24 AM   #10
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Hi Jenn

Nice to meet you. I was diagnosed in 2001. I started out really aggressively (that is to say, my MS had probably been around for quite some time and I ignored it because it came and went, but when I was diagnosed, I had lots of lesions and it smacked me around pretty hard).

My neuro didn't really give me a choice of whether I should or shouldn't go on one of the injectables - I just had to choose which one - which was a good thing, because it really put the brakes on what the doctor thought was going to be a very speedy and nasty disease process. So, nearly 8 years on Betaferon and three and a half on Tysabri when Beta got to hard to live with.

Now, eleven years on, I am still mobile and still doing the majority of things I like to do. Who knows, I may have been doing it without the drugs....but somehow, I don't think so.

Everyones disease is different, and everyones course is different - it is a hard choice for many, but is was a relatively easy one for me.



Multiple Sclerosis Dx 2001 Craniotomy to clip brain aneurysm 2004. ITP 1993.
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